Voices of Parents of Children with Major Congenital Anomalies: Themes from Initial Diagnosis, NICU Hospitalization, and Discharge Home

Voices of Parents of Children with Major Congenital Anomalies: Themes from Initial Diagnosis, NICU Hospitalization, and Discharge Home | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article Voices of Parents of Children with Major Congenital Anomalies: Themes from Initial Diagnosis, NICU Hospitalization, and Discharge Home Krishna Acharya, Jessica Lyon, Natalie McAndrew, Alexis Geich, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4980057/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 05 Mar, 2025 Read the published version in Journal of Perinatology → Version 1 posted 9 You are reading this latest preprint version Abstract Objective : To describe the parent experience of having an infant with a congenital anomaly from prenatal diagnosis. NICU, and post-NICU care Study design : Qualitative study Results: We interviewed 18 parents (13 mothers, 5 fathers) whose children were in our NICU to explore challenges in care and identify strategies to improve care. During the prenatal period, key challenges were inadequate initial support, having to decide about medical procedures, impact on mental health, and loss of a “normal” baby. In the NICU, challenges were lack of interdisciplinary communication, isolation, and knowing how to parent. After discharge home, challenges were hypervigilance, burden of caregiving, adjusting to life at home, and financial impact. Conclusion: Parents of infants with anomalies experience significant stress and isolation after initial diagnosis and NICU care. Key interventions helpful to families were empathetic and consistent healthcare teams; consistent communication,engagement in NICU care, and ongoing support after discharge home. Health sciences/Health care/Health services Health sciences/Health care/Patient education congenital anomalies parent experience birth defect NICU experience BACKGROUND Infants with congenital anomalies constitute a significant proportion of NICU admissions at children’s hospitals, and often have chronic, complex healthcare needs. ( 1 – 4 ) Parents of these children undergo a uniquely stressful experience, often beginning during pregnancy upon fetal diagnosis, and continuing through their child’s birth, NICU admission, and post-NICU life. ( 5 , 6 ) Parents of children with anomalies, particularly those with more complex illness, often experience lower quality of life during and after NICU discharge.( 3 ) There is a large body of neonatal research about the parent experience of caring for a premature infant and strategies to improve the NICU experience and post-NICU transition for these families. ( 7 – 10 ). However, research about the experiences of parents of infants with congenital anomalies has been limited, and include studies about the psychological impact of prenatal diagnosis, ( 11 – 17 ) parental experiences after termination of pregnancy for lethal diagnoses, ( 18 ) and caring for infants with congenital anomalies into childhood ( 19 , 20 ). A description of parents’ experiences across the trajectory from diagnosis to life after discharge home has not been adequately explored. This is of critical importance, as interventions to support parents may need to be tailored to their specific context. For example, bereavement support needs differ from the support needs of caregivers coping with a child with a chronic condition. The objective of our study was to describe the experiences of parents of infants with congenital anomalies in the prenatal period, during the NICU stay, and following the transition to caring for their child at home. Our goal was to identify strategies identified by parents that could improve family-centered care at various stages of this experience. METHODS Study Design We conducted a qualitative, descriptive study to examine the experiences of parents of infants with a congenital anomaly. This study was reviewed by the Children’s Hospital of Wisconsin Institutional Review Board (IRB00002082) and deemed exempt. Sampling Strategy We enrolled parents of children with anomalies who received care in our NICU between March 2022–2023. We used purposive sampling to include children with a wide range of major congenital anomalies. Parents of multiples were included if at least one child had a diagnosis of an anomaly. We excluded parents of infants with isolated cardiac anomalies, infants discharging on home hospice, parents with known minimal NICU visitation, under the age of 18, and non-English speaking parents. We used a dual, prospective and retrospective screening strategy for enrollment. Our level IV NICU maintains a database of all patients admitted to the NICU that captures diagnoses including anomalies. For retrospective enrollment, we contacted parents of eligible patients discharged from our NICU within six months of study onset. Our NICU has a nurse call-back program for all patients discharged from the NICU; the nurse asked for permission to be contacted by our research team. Parents who agreed were contacted for formal consent. For prospective enrollment, we screened weekly for infants admitted to our NICU with major anomalies. Eligible parents were contacted about the study during their NICU stay once discharge was anticipated. For parents in both enrollment groups, our research team contacted them via telephone within six months of NICU discharge to schedule a video interview. We attempted to reach parents a total of 3 times. If both parents agreed to be interviewed, we gave them a choice to interview separately or together. Informed consent was obtained from parents for the interview as well as a retrospective chart review to assess their child’s NICU course. Data Collection Interviews were conducted and recorded via HIPAA compliant Zoom®. Interviews were conducted by three trained research team members (J.L., A.G., T.AZ.) who were healthcare professionals. A semi-structured interview guide was created by the researchers with experience in qualitative methodology (N.M., S.L.) with feedback from a former NICU parent who serves on our NICU parent advisory committee. The interview included questions to explore what parents found challenging and helpful during their journey. Parents received a gift card following interview completion. Demographic, NICU illness severity and post-discharge data were collected by retrospective chart review. Data Analysis We used inductive qualitative content analysis to determine latent themes from parent interviews. We used Rev.com© to transcribe interviews verbatim. Research team members (J.L., A.G., T.AZ.) listened to the audio and compared them to the written transcripts for accuracy. Each transcript was reviewed and coded independently by two investigators (J.L., K.A.); K.A. used a software qualitative data management program (NVivo10) and J.L. coded data by hand. To ensure rigor, these investigators met regularly to discuss coding decisions, interpretation of the data, and emerging themes. Data collection was stopped after data saturation was reached. A qualitative methods expert (N.M.) independently reviewed the findings at multiple points throughout the analytic process. After all interviews were coded, investigators (J.L., K.A., N.M.) met to synthesize themes and subthemes. RESULTS After retrospective screening, we contacted 29 eligible parents who gave permission to be contacted;13 parents consented to the study, and 6 were interviewed. Through prospective screening, we identified 60 eligible patients; of these, 13 consented to the study and 12 were interviewed. In-depth, semi-structured interviews were conducted from March 2022 -2023 with 18 parents (13 mothers and 5 fathers). One interview included both parents. Interviews lasted 30 to 60 minutes. Parent and infant demographics are shown in Table 1 . Most parents were white, married, and living in middle-income neighborhoods. Most infants were born after 34 weeks; one was an extremely preterm infant with a congenital anomaly, and three infants had multiple anomalies. Most infants received surgery in the NICU and had a long length of stay. One-third of infants were discharged with technologic support. Table 2 highlights three themes related to parental challenges, which are described in detail below. Loss of a normal pregnancy Inadequate support from healthcare team at initial diagnosis After being told about their child’s condition by their primary obstetrician, many were not told what this information meant for their child. Prior to being seen in a multidisciplinary fetal care center, parents dreceived inadequate information and support..Parents also described the stress of having to decide about medical options during pregnancy, often with time constraints to make these decisions, for example, decision to terminate the pregnancy, or deciding about fetal interventions. Impact on parent mental and emotional health was significant, especially in mothers. Many mothers experienced guilt that they had caused their infant’s condition. One mother stated, “I think I struggled a little bit with feeling, what did I do wrong to cause this? Because I had COVID in my first trimester and I'm like, did that cause this and stuff?” (Mother 4). Some parents experienced depressive symptoms once learning about their child’s diagnosis and feared losing their child, especially when they had experienced prior pregnancy loss. They braced themselves for more bad news at every appointment. Parent mental health was also impacted by prognostic uncertainty and a loss of control, and knowing they were not having a ‘normal’ baby as they compared their pregnancy with normative healthy baby expectations from their family and friends. Parenting a baby in the NICU Parents found it frustrating when there was inconsistent care and communication , especially as rotating providers sometimes changed the care plan established by the previous provider, or when there was lack of interdisciplinary communication between different specialties. Similarly, when there was inconsistent nursing care, parents felt they were responsible for relaying important information about their child to the nurses for fear that something vital would be missed. “ It's frustrating because every two weeks we got set back a week because the new doctor would come in and wouldn't feel comfortable sending us home, or wouldn't feel comfortable moving forward with anything with her” (Father 2) Parents often felt helplessness and isolation in the NICU. They were not able to provide comfort to their child, such as after surgery or when their child was in pain, not able to make their child’s diagnosis better, and had to routinely trust others with their child’s care. Some parents feared connecting with other families in the NICU. “ But there were families who didn't get to take their kid home. And so part of me was like, that's not my story and I can't imagine that story. And so how dare me want to be friends with you and talk about my baby or my experience when you are dealing with something I cannot imagine? So to me that was like, I kind of felt okay with not having that immediate support.” (Mother 6) Parents struggled with knowing how to be a NICU parent . Holding and bonding with their baby was challenging due to medical equipment and underlying diagnosis, for example, gastroschisis, or a baby who underwent abdominal surgery. Feeding in the NICU was a challenge and feeding setbacks were particularly difficult. Mothers described the complexity and challenges of breastfeeding and pumping and the worries about their baby not tolerating feeds. Many parents had to balance parenting other children and work while also trying to not disrupt the family unit. Parents felt guilty that they were spending more time with one child over the other.. Adapting to life outside the NICU Hypervigilance and worries referred to parents’ descriptions of constantly worrying about their child. Parents had short-term worries related to sleeping, feeding, and their child getting sick, but also long-term worries about how their child would grow, develop, and feel about their condition. As one father described, “ I realize that his diagnosis at that point, and still today a little bit, is kind of a moving target. But just trying to get the perspective and then also understanding that time is what's needed too. And that, while that's hard, and I think that's something that we've really struggled with, is that we won't really know the extent of the damage or the kidney disease until some time has passed, and the surgery has had its chance to progress” (Father 4). At home, parents felt the burden of caregiving and having less time for themselves and for their other children. Often, their child needed medical equipment assistance, rigorous feeding or therapy schedules, and multiple follow-up appointments. Some children had to be re-hospitalized which was particularly stressful. Some parents felt they were provided with unrealistic management plans that were impossible to accomplish. Others described how these burdens may affect their family long term. Even with a routine, parents felt overwhelmed. As stated by one mother “There's medications I have to give him. Then, there's physical therapy I should be doing with them. Then, there's trying to do oral foods I should be doing with them. Then, maybe I should be getting him on the same exact off feeds from 7:00 to 9:00 in the morning and at night or something like that. There's just so much to do to try and get in a good routine” (Mother 11). Adjusting to life at home was a challenge for most parents. They could no longer rely on 24/7 monitoring the NICU provided to ensure their child was safe at home. This was more difficult for first-time parents who were also learning basic newborn cares. Numerous parents described the financial impacts related to their child’s healthcare, acknowledging that the cost of having a child admitted to a NICU was enormous. Some of the parents went from dual-income households to single-income households in order to provide care for their child. Parents also found it difficult to navigate the complexities of insurance coverage and reported spending a lot of time on the phone. Fathers vs. mothers During the prenatal period, fathers described feeling helpless when they could see their wife was so uncomfortable and wanted to do more to help. After birth, fathers felt they spent less time with their child in the NICU compared to mom and therefore felt less comfortable handling their baby. Fathers often struggled to get paternity leave, and were often the parent who was responsible for taking care of infant’s siblings. Once discharged home, fathers found it challenging to balance their work while also trying to support their family. Parents described key strategies that improved their ability to be a parent and feel supported (Table 3) as below. Creating comprehensive, consistent, and caring medical teams Parents identified multiple examples of system and individual responses to demonstrate comprehensive and caring management. These included access to a comprehensive prenatal care team where families could meet with different specialists and have in-depth, honest conversations to better understand their child’s diagnosis. Having a primary contact within this center, such as their nurse coordinator, to help them navigate through their prenatal journey, was especially valued. In the NICU, parents described the power of having primary nurses who knew their child and provided consistent and supportive care. They appreciated that primary nurses would advocate for their child, get their questions answered, and were available, night or day to answer questions about their baby. Parents felt they could trust these primary nurses with the care of their baby. It was powerful when doctors and other providers went above and beyond medical care , such as when residents held their baby on nights, when providers asked about parental well-being, and thought of creative ways to solve problems. Providing empathetic and accurate communication Balancing hope with reality Parents appreciated when providers were honest in communicating both good and bad news while continuing to provide hope for their child. They found it helpful when providers acknowledged their emotions and helped assuage guilt. Receiving consistent messaging about their child’s condition was valued as was communication using drawings when applicable and describing all possible scenarios. Parents appreciated proper communication etiquette in which providers considered a parent’s emotional and physical state before delivering significant medical information about their child. Engaging Families in NICU Care Encouraging parental presence in the NICU Parents found early bedside involvement to be very beneficial. They appreciated the education they received from hands-on practice with nurses, which helped relieve their anxieties and better prepared them for discharge home. Some parents found it helpful to attend NICU rounds, as this gave them an opportunity to receive updates and advocate for their child. The NICU offered resources to support families . Examples of resources that parents found helpful were the Ronald McDonald house, parent/peer support groups, child life specialists, lactation, case managers, therapists, psychologists, and social workers. Parents desired better preparedness for NICU discharge, including when to expect discharge (which often changed), and practical guidance about what to expect at home as opposed to paper handouts with discharge instructions. Supporting families after discharge home Most parents described the joys of seeing their baby’s developmental progress at home, therefore setting the expectation that being home could be a developmental intervention . Making follow-up appointments easier for families who are navigating multiple appointments is important. Parents also felt the loss of a primary team coordinating their child’s care and having easy access to all subspecialists like they did in the NICU, and often felt their pediatrician was not able to address all issues. Providing connection to other families who had a child with a similar diagnosis was helpful for parents. Often, parents sought these connections on their own. These relationships gave parents a resource in which they could ask questions and learn more about their child’s diagnosis, while also giving them hope and emotional support. Some parents felt a lack of mental health support once leaving the NICU. All families in our NICU have access to a psychologist to learn how to ease parental stress. Once home, parents no longer had access to these services and felt they were on their own. Most parents relied on their personal support network, including family and friends, to help. Home nursing support was helpful to many families that qualified for this service. Parents appreciated having access to medical care once discharged and saw the benefits to their child’s development and care. DISCUSSION In this single-center study, we describe the experience of parents of children with congenital anomalies, from initial diagnosis, during the NICU hospitalization, and then following the discharge home. Our data provide insight into what resources and interventions may be helpful for families. During the prenatal period, parents grieved the loss of a normal pregnancy in ways different from what has been reported for parents of premature infants. ( 11 , 22 – 24 ) For parents of premature infants, the loss of pregnancy results from pregnancy interruption and being ‘thrown into’ parenthood coupled with significant maternal events and loss of control over these events. ( 24 ) For parents expecting a baby with an anomaly, there may be more time to prepare for parenthood, but this time is fraught with significant emotions from knowing and coping with the fetal diagnosis and a highly medicalized pregnancy where they may have to make decisions about medical interventions for themselves and/or their baby. A helpful prenatal intervention described by parents in this study was the referral to our multidisciplinary fetal concerns center, which has been a well-established model of perinatal care for pregnancies complicated by fetal anomalies. ( 25 ) Key components of this model include providing multidisciplinary communication, understanding the family’s goals and values, and providing treatment recommendations based on those goals. However, most families will learn about the fetal diagnosis at their primary OB office where access to a multidisciplinary team specializing in these cases may not be available at first. Providers at these centers should take into consideration the enormous initial impact of a fetal diagnosis on families and focus on providing psychological support in addition to medical information while establishing referral to a multidisciplinary center. Providers at fetal centers should take into consideration that making time-sensitive decisions can be intensely stressful for families and help them understand and process information that can help them make these decisions. Once baby is born and in the NICU, NICU providers need to recognize the journey these parents have been through. Reviewing all relevant prenatal data about diagnosis, family support, and prenatal conversations about extent of intensive care in accordance with family’s goals provides a starting ground for conversations with families and establishes continuity of care. While in the NICU, parents often struggled to navigate parenthood in ways similar to those described for parents of premature infants such as how to hold, bond, feed, and be present for their child. ( 26 ) What may be different for parents of children with anomalies is a heightened sense of isolation, as many of these individual diagnoses are rare, and parents have more worry about their child’s comfort as many of these children require surgical intervention. ( 28 ) Early and ongoing inclusion of parents in their child’s NICU care is critical to support parents psychologically and to prepare them for transitions in care ( 25 – 28 ). To better support parents of infants with anomalies in the NICU, it may be especially important to validate their experience of parenthood, include their opinions in clinical decision-making, and empower them to perform routine parenting tasks in the NICU environment despite differences in equipment or anatomy that may require modifications to those activities. Parents desired effective interdisciplinary communication and valued empathy, humility, and personal connections with their medical team. While these qualities should be applied to all NICU families, specifically for parents of infants with a congenital anomaly, good interdisciplinary communication is key. Interdisciplinary communication should occur at regular intervals and should include not only discussions about medical plans but also how teams will communicate these plans with families. Healthcare teams must discuss what will be communicated to families and consider the parents’ readiness to receive this communication. Routine and required education for the NICU team and subspecialist providers about best practices for communicating with families could improve their communication skills and ultimately help families feel heard and acknowledged as partners in care. After discharge, many parents describe the excitement of being home with their child and the joy they experienced with their child’s developmental gains. However, some felt that things were not necessarily easier when home. We previously reported that parents of children with congenital anomalies have a lower quality of life after discharge than parents of preterm infants. ( 3 ) This study provides insight into why this occurs based on parents’ descriptions of viewing their child as fragile, the stress of follow-up appointments and therapies, and a lack of resources. To help with this transition, families need a collaborative multidisciplinary support system once discharged home. ( 28 , 29 ) Areas of need that emerged from parents were an improvement in appointment scheduling and number of follow-up appointments, more expansive parent peer resources, continued access to parent mental health support, and greater availability of home nursing support. While many changes can be made within the healthcare system to improve care for families of children with congenital anomalies, some changes need to be implemented at the societal level.These strategies include greater awareness and support for complicated pregnancies especially mental health support, affordable healthcare, paid family leave, expanded childcare options, easier access to supplies/equipment for children with special needs and increased availability of respite care. Previous studies have acknowledged the impact societal demographics have on families care in the NICU, especially how challenges are exacerbated for families of color and low socioeconomic status. ( 27 – 31 ) There is a need to improve collaboration between the healthcare system and community agencies to ensure that parents have seamless transitions and support as they navigate caring for their child at home. Study Limitations Our study has several limitations. As a small, single-center study conducted during the COVID-19 pandemic, our ability to recruit a diverse sample of parents from a variety of racial, cultural, and socioeconomic backgrounds was limited. Parents in this study had access to care at a multidisciplinary fetal concerns center. Those cared for within healthcare organizations without this resource may require support that may differ from that described by those we interviewed. Parents who participated in our study were highly involved in their child’s care and were frequently present in the NICU. Therefore, parents who may have barriers to their involvement in care should be targeted in future studies. Understanding difficulties that impede one’s ability to be part of NICU care is a critical area of inquiry that has not been well explored in the literature. Despite these limitations, this study highlights a more comprehensive examination of parent’s experiences from pregnancy to care at home. CONCLUSIONS Parents of infants with anomalies experience a complicated prenatal journey that has a significant impact on their mental health and their identity as parents. Parents’ sense of isolation, worries about keeping their baby comfortable, and need for greater support after discharge home are key areas in which interventional strategies are needed. A consistent, caring medical team starting in the prenatal period, recognition of these parents’ unique NICU needs, a focus on advocacy and consistent cross-disciplinary communication, early and ongoing family engagement in the NICU, and improving systems of support following discharge are key ways to improve the experience of these families. Future research should aim to develop and test supportive interventions in partnership with NICU families who are experts in the needs of this population. Declarations Funding: This study was internally supported by funds from the Department of Pediatrics, Children’s Wisconsin Author Contributions: All authors contributed to the study design, investigation, and preparation of the manuscript Conflicts of Interest and Financial Support : The authors have no conflicts of interest or financial disclosures. Data sharing statement Data from the study are not available for sharing Acknowledgements The research team is grateful to Monica McLeod, former NICU parent, who reviewed the study design and interview guide and provided critical feedback. We are grateful to all the parents who participated in the research study and thank them for their contributions. References How Infants Die in the Neonatal Intensive Care Unit: Trends From 1999 Through 2008 | Critical Care Medicine | JAMA Pediatrics | JAMA Network [Internet]. [cited 2021 Aug 4]. 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Pediatrics. 2022;150(3):e2022056971. Sigurdson K, Mitchell B, Liu J, Morton C, Gould JB, Lee HC, et al. Racial/Ethnic Disparities in Neonatal Intensive Care: A Systematic Review. Pediatrics. 2019;144(2):e20183114. Sigurdson K, Profit J, Dhurjati R, Morton C, Scala M, Vernon L, et al. Former NICU Families Describe Gaps in Family-Centered Care. Qual Health Res. 2020;30(12):1861–75. Sigurdson K, Morton C, Mitchell B, Profit J. Disparities in NICU quality of care: a qualitative study of family and clinician accounts. J Perinatol. 2018;38(5):600–7. Profit J, Gould JB, Bennett M, Goldstein BA, Draper D, Phibbs CS, et al. Racial/Ethnic Disparity in NICU Quality of Care Delivery. Pediatrics. 2017;140(3):e20170918. Tables Table 1. Parent and infant demographic and clinical characteristics (n=18 parents and 13 infants) Parent Demographics (n=18) N (%)* Age range, years 18-24 25-34 35-44 Unknown 2 (11) 11 (61) 3 (17) 2 (11) Gender Female Male 13 (72) 5 (28) Race Caucasian White Asian Hispanic 16 (89) 1 (5.5) 1 (5.5) Employment Employed Unemployed 12 (67) 6 (33) Marital Status Married Partnership, not married Single 16 (89) 1 (5.5) 1 (5.5) Has other children 11 (61) Religion Christian Jehovah’s Witness Does not identify with a religion 10 (55.5) 1 (5.5) 7 (39) Median household income based on zip code data (based on 2021 USD): $100,000 1 (5.5) 10 (55.5) 4 (22) 3 (17) Time of interview from NICU discharge, median (IQR), months 3 (2-5) months Infant characteristics (n=13) n=13 (%) Gestational age 22w0d-27w6d 28w0d-33w6d 34w0d-36w6d >37w0d 1 (8) 1 (8) 5 (38) 6 (46) Age of child at interview, median (IQR), months 4.5 (3-7.75) months Gender Female Male 5 (38) 8 (62) Twin birth 2 (15) Infant Anomalies Congenital diaphragmatic hernia Gastroschisis Tracheoesophageal fistula/Esophageal atresia Amniotic band syndrome Facial femoral syndrome Hydronephrosis Intestinal atresia Myelomeningocele Omphalocele 3 2 2 1 1 1 1 1 1 Multiple anomalies 3 (23) LOS in the NICU, median (IQR), days 46 (31-69) days Received mechanical ventilation Duration of mechanical ventilation, median (IQR), days 11 (85) 8 (2-14) days ECMO 1 (7.7) Had surgeries while in the NICU Number of OR trips, median (IQR) 12 (92) 2 (1-4) Needed discharge supports Home Oxygen G-tube VP Shunt 4 (30) 2 (15) 2 (15) 1 (7.7) *Continuous variables are presented as medians with interquartile ranges IQR=interquartile range; LOS= length of stay; ECMO= extracorporeal membrane oxygenation; G-tube= gastrostomy tube; VP shunt= ventriculoperitoneal shunt TABLE 2: Parents’ Experiences of their Child’s Anomaly from Initial Diagnosis, Birth Hospitalization and Discharge Home: Themes, Subthemes and Exemplar Quotes Themes Subthemes Quotes Loss of a normal pregnancy Inadequate support from the healthcare team at initial diagnosis “Here's what's wrong with your baby. Any questions?" And I was like, "Well, what are questions I should ask? Because I don't know anything.” (Father 3) Having to decide about medical procedures “So from her diagnosis and to the date of the surgery, we had in total six weeks to make a decision on whether or not we to go through with the (fetal) surgery” (Mother 10) Impact on mental health “I ended up staying in bed for about a month and a half because I was just so depressed because I'm like, well, I'm going to lose her anyways and if I get attached it's literally going to break me. I couldn't go through another loss.” (Mother 2) Not a “normal” baby “So she brought a gift for the baby, and all the clothes were zero to three months. I see the clothes and I just cried for half hour. I couldn't... She's like, "What did I do wrong?" I had to explain the baby could not wear them because the baby will be born with a special needs. He cannot wear any clothes. He probably has to stay naked for three months.” (Mother 7) Parenting a baby in the NICU Inconsistent care and communication/Lack of interdisciplinary communication “And the communication between the Children's surgery team and I don't even know who it was who came back to my labor and delivery room, they were completely different stories. They would do their stuff. They wouldn't even talk to anybody. They would come, and do their stuff, and they would leave, and then, the nurse would come and be like, "So what'd they say?" And it's like, "Well, they didn't really say anything to me, either." So then, they're like, "Well, let me find out." So then, she was texting, and then we'd have to wait to find out information. So communication, amongst the different teams, I think, would be greatly beneficial.” (Father 5) Isolation and Helplessness “Most challenging on all these times was not knowing what pain he was in, especially after the surgery. What was the level of pain, how he handled that, how we were holding him.” (Mother 7) Knowing how to be a NICU parent “This is going to be a funny way to put it, but NICU etiquette. We weren't sure what we could and couldn't do, what we could and couldn't ask. So it took weeks for us to hold her at first because we weren't even sure that that was something we could do or ask” (Mother 10) Feeding in the NICU I couldn't comprehend how he was going to be okay if he couldn't eat anything. I don't know, so I feel like that would've been ... I feel like just that needed to be explained to me that he was getting stuff through the IV so he was going to be fine. Because the first thing they teach you is they'll want to nurse right away.” (Mother 8) Balancing life outside the NICU “Because she had all the care that she could need in that moment (in the NICU). And our son (at home) had experienced weeks upon weeks without both of his parents, and that's something that has never happened for him. And so, it just felt like he needed us and she almost needed that space to grow. and I know it's what I needed.” (Mother 10) Adapting to life outside the NICU Hypervigilance and worries “But that fear of is he going to develop? Is he going to develop on time? Is he going to continue to eat? Is he going to continue to gain weight? There's just so many unknowns.” (Mother 13) Burden of caregiving “ In a perfect world, yes, she would wear her brace 23 hours a day and she would wear the band 23 hours a day, and there's just no way to physically get to that. The list of stretches and massages and just everything just keeps growing and growing and growing.” (Father 1) Adjusting to life at home “Probably what was the most nerve-wracking thing was going from an environment where their vitals are being constantly monitored 24/7 to going home and then now you're like, how do I know he is alive? Like I said, we're first time parents, so we didn't have a sense of normal for how to take care of a normal baby and a normal situation at home.” (Mother 5) Financial impact “It's a ridiculous amount of money that would've been out of pocket, even with our insurance, so that was challenging.” (Mother 8) Table 3: Potential Strategies/Interventions to Improve the Perinatal and Neonatal Experience of Parents of Children with Anomalies at the Health Care and Societal Levels: Themes, Subthemes and Exemplar Quotes Themes Subthemes Quotes HEALTHCARE LEVEL Creating comprehensive, consistent, and caring medical teams Comprehensive prenatal care team “Once we arrived at Children's (Fetal Concerns Center), just where we were at, the fact that we were talking with a NICU doctor, who even in that case, her whole deal is difficult pregnancies that end up in the NICU as opposed to just a maternal fetal specialist who sees all the stuff, but then just kind of talks you through everything that's going on.” (Father 1) Power of primary NICU nurses “And they were just very, anytime I had a question or anytime I had a concern, they were like, "Just advocate for yourself. Just ask the question, just advocate for yourself." And so I did feel like that was good advice for me because I think if they wouldn't have kept saying these things to me, I might have not asked as many questions or not said, "No, this part is really important to me." (Mother 6) Beyond medical care “The NICU doctors really made us feel so supported, validated, included. I'm not a medical professional, but how they all were so welcoming that I stood in on rounds, they valued my opinion. That was a huge feeling to be validated. “(Mother 13) Providing empathetic and accurate communication Balancing hope with reality “Everybody was really transparent with us, but in a way, where it didn't make you worry, which was nice, because it was one of those things, where I think you just gear yourself, when you're in that field, to be able to provide good and bad news, with a level of control, that doesn't put you in a situation, where you're making the family anxious, when it comes to bad stuff, or making the family too happy, when you're like, "Hey, I got good news for you, but there could be some variables here, that are bad." Where you build them up, and then find out the bad.” (Father 5) Consistent messaging “So what the woman came and told me was happening with my baby was world's different than what actually was happening. So that was a really hard point because you just took my baby from me and I can't do anything about it. And now for that first part it was a little nerve wracking, well is that really what's going on? Or are you sure? Can I talk to the actual person? It just put me on edge a little bit, especially when I couldn't hear the firsthand account myself.” (Mother 6) Communication etiquette “But, some self-awareness, I would say, of if my wife is behind a curtain and she's been up since 3:00 AM feeding him in the NICU and you come in and you tell her from behind a curtain that he's going to need a kidney transplant most likely without any sort of backing, whether it’s data, or a test, or whatever, and you lay the groundwork for worst-case scenario right out of the gate, it’s incredibly overwhelming and incredibly draining, one, for a new mom who literally just delivered 24 hours ago or 48 hours ago, to just a family to hear that things aren’t what you thought it was.” (Father 4) Engaging families in NICU care Encouraging parent presence in the NICU “ We didn't hesitate to get our hands in there, and help out with cares, and help out with everything, to learn the what-to-dos, and what to don'ts, and stuff like that, which was, I think the biggest benefit that we could have taken out of the NICU stay, was to do that. Because when we brought him home, it wasn't as scary, as I think it could have been” (Father 5) Resources to support families “Definitely, take full advantage of all the different resources that are there, because there are so many different resources. Me, personally, I didn't spend the night in the NICU. I went to Ronald McDonald every night and slept so that I could be there mentally every day. And that helped me.” (Mother 11) Better discharge preparedness “You leave there with a stack of handouts and you're like, "I don't even know what to do with this." That's probably helpful for some people, but it was just very overwhelming, because that was a lot of paper.” (Mother 4) Supporting families after discharge home Home as a developmental ‘intervention’ “So the last couple weeks have been (at home), have been the most exciting with him. He has been smiling so much, and it just makes my heart happy. It’s the sweetest. And he’s been cooing and talking and engaging more. And seeing that transition, I mean, it was almost, it was overnight. He just went from being a newborn to all of a sudden he’s more engaged and he is looking at us, and he’s smiling and he’s reacting to us. And that’s been so fun. And I mean, it is crazy to go from the newborn stage. Now you have this baby that’s developing a personality and stuff. That’s been really fun to see. And he really is a generally very happy baby. He has his moments, but as they all do, but he’s very happy.”(Mother 4) Making follow-up easier “So it was PT, OT, general surgery, cardiology, dermatology, ortho hand, ortho leg, "Oh, you need a renal ultrasound. Oh you need a echocardiogram. Oh we need X-rays. We need you do a sweat test for her sister. We need you to do blood work for her. We need a weight check. We need a pediatrician check." I would literally just drive them around to appointment after... I'd take one and leave the other one and be here and go there.” (Mother 1) Providing connection to other families “I nannied for a family and the son had (the same diagnosis) as well, and so right away I was able to reach out to the mom, and that was very helpful. We texted pretty much every day, and it was just very helpful because she understood everything, so that was super amazing. And if anything comes up, I can always reach out to her and stuff, so that was really helpful.” (Mother 8) Supporting parent mental health after discharge There's no one asking you every day if you're okay, or stopping in and checking on your mental health like there was in the hospital. So, the March of Dimes was great while there, but it would almost be great if there was a March of Dimes outside of that hospital environment to say, hey, we need to check up on this person because this is how long their stay was until they tell us not to do it anymore.” (Mother 2) Adequate home nursing support “So one thing that they advise was having the nurses come into the house, the house calls, and just to check on him and work with him. And that helped a lot because with him having a huge cast was very hard to move or do... He couldn't do tummy time. So he couldn't do a lot of things. He couldn't even sleep well because even the back was uncomfortable to sleep. But they came and they worked with him with hands and then legs and head control. And right now, he's doing very good.” (Mother 7) SOCIETAL LEVEL Support for complicated pregnancies Creating awareness about complicated pregnancies “We have friends that have had kids, and they're like, "Oh, my God. I love being pregnant. It's so much fun. I just feel like I glow, and I love the feeling I have growing my child," and stuff like that. Whereas, for us, it was like, "No, we're on pins and needles constantly. When's the next bit of bad news coming?" (Father 5) Support for NICU care Affordable healthcare “But our deductible last year is 8000. This year, we’ve already hit our deductible. In two years, it’s $16,000 for medical bills.” (Mother 1) Paid family leave “I used probably a bunch of vacation and stuff, that I could have obviously not had to use, had I had the opportunity to do the FMLA leave, but with that comes less pay, obviously, because it’s unpaid. But still, it would’ve been one of those things where I wasn’t constantly scratching the bottom of the barrel, to try to make sure I had time off, for one of A’s procedures, or something like that. Again, after a month, or a month to a month and a half of it, they finally started to get the picture of, “Hey, this isn’t a couple of days thing.” We ended up being in the NICU, for five months, I think, it was.” (Father 5) Support for children (and families) with medical needs Childcare options “We do have them go to daycare full-time, and E’s daycare has been very accommodating and willing to learn how to take care of him, and above and beyond, like I never would have expected that they would. They learned how to vent his G-tube when he gets fussy and how to do dressing changes if he’s leaking, and just are very communicative and willing to try new things, which I think is not a standard daycare experience, so I’m very appreciative.” (Mother 5) Easier access to supplies/equipment for children with special needs “They can’t go on bouncers because they don’t have core strength at all. They can’t sit in any of those… we had to buy a special highchair so that they can recline back because they have to have that.” (Mother 1) Availability of respite care “There's medications I have to give him. I should probably get him on a sleep routine now that he is almost six months old. Then, there's physical therapy I should be doing with them. Then, there's trying to do oral foods I should be doing with them. Then, maybe I should be getting him on the same exact off feeds from 7:00 to 9:00 in the morning and at night or something like that. There's just so much to do to try and get in a good routine. Then, throwing a three-year-old in there…” (Mother 11) Additional Declarations There is NO conflict of interest to disclose. Cite Share Download PDF Status: Published Journal Publication published 05 Mar, 2025 Read the published version in Journal of Perinatology → Version 1 posted Editorial decision: revise 07 Nov, 2024 Review # 2 received at journal 03 Nov, 2024 Reviewer # 2 agreed at journal 03 Nov, 2024 Review # 1 received at journal 08 Sep, 2024 Reviewer # 1 agreed at journal 05 Sep, 2024 Reviewers invited by journal 28 Aug, 2024 Submission checks completed at journal 27 Aug, 2024 Editor assigned by journal 26 Aug, 2024 First submitted to journal 26 Aug, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4980057","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":346492174,"identity":"baa06ea5-c2af-4c1a-b0a5-bd7e27947c95","order_by":0,"name":"Krishna Acharya","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAy0lEQVRIiWNgGAWjYBACCR4GBmYwi70BTDE2EK+F5wDJWiQSiNQi2XP44eeCmnuJ/TNfJ37mYbCR3XCAgBZp3jZj6RnHihNn3M7dLM3DkGZMUIscP4MZMw9bQmLD7dxtzDkMhxOJ0ML+jZnnX0Li/JtnQVr+E9YizdtjxszblpC44QYvSMsBwloke84US/P2JRhvPAP0yx+DZOOZhLRInEnf+JnnW4LsvONnN36cUWEn20dICww4NoApAyKVg4A9CWpHwSgYBaNgpAEAedVC+8fitbAAAAAASUVORK5CYII=","orcid":"https://orcid.org/0000-0002-6073-4669","institution":"Medical College of Wisconsin","correspondingAuthor":true,"prefix":"","firstName":"Krishna","middleName":"","lastName":"Acharya","suffix":""},{"id":346492175,"identity":"88fd832c-f34b-4eaa-bd7f-4b782c6f8134","order_by":1,"name":"Jessica Lyon","email":"","orcid":"","institution":"Medical College of Wisconsin","correspondingAuthor":false,"prefix":"","firstName":"Jessica","middleName":"","lastName":"Lyon","suffix":""},{"id":346492176,"identity":"183562ee-54af-432c-a46f-acd8dcd897e4","order_by":2,"name":"Natalie McAndrew","email":"","orcid":"","institution":"University of Wisconsin-Milwaukee","correspondingAuthor":false,"prefix":"","firstName":"Natalie","middleName":"","lastName":"McAndrew","suffix":""},{"id":346492177,"identity":"bd978496-e96f-4df6-b930-934587f17b61","order_by":3,"name":"Alexis Geich","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Alexis","middleName":"","lastName":"Geich","suffix":""},{"id":346492178,"identity":"37033a1e-7be8-4970-82f6-99d9dc154452","order_by":4,"name":"Tala AbuZahra","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Tala","middleName":"","lastName":"AbuZahra","suffix":""},{"id":346492179,"identity":"448778cc-e706-479c-9fb6-adb90d52a126","order_by":5,"name":"Steven Leuthner","email":"","orcid":"https://orcid.org/0000-0002-5800-0949","institution":"Medical College of Wisconsin","correspondingAuthor":false,"prefix":"","firstName":"Steven","middleName":"","lastName":"Leuthner","suffix":""},{"id":346492180,"identity":"44471af1-c39e-476c-b38b-996e07f1cc90","order_by":6,"name":"Joanne Lagatta","email":"","orcid":"https://orcid.org/0000-0002-5147-2396","institution":"Medical College of Wisconsin","correspondingAuthor":false,"prefix":"","firstName":"Joanne","middleName":"","lastName":"Lagatta","suffix":""}],"badges":[],"createdAt":"2024-08-26 20:05:13","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4980057/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4980057/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1038/s41372-025-02255-8","type":"published","date":"2025-03-05T05:00:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":77753269,"identity":"15bba8da-bae5-4161-b40a-bb6fee0c610a","added_by":"auto","created_at":"2025-03-05 08:05:48","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1233542,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4980057/v1/3a6def23-46ac-485a-88af-ead195dc72e3.pdf"}],"financialInterests":"There is \u003cb\u003eNO\u003c/b\u003e conflict of interest to disclose.","formattedTitle":"Voices of Parents of Children with Major Congenital Anomalies: \r\nThemes from Initial Diagnosis, NICU Hospitalization, and Discharge Home","fulltext":[{"header":"BACKGROUND","content":"\u003cp\u003eInfants with congenital anomalies constitute a significant proportion of NICU admissions at children\u0026rsquo;s hospitals, and often have chronic, complex healthcare needs. (\u003cspan additionalcitationids=\"CR2 CR3\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Parents of these children undergo a uniquely stressful experience, often beginning during pregnancy upon fetal diagnosis, and continuing through their child\u0026rsquo;s birth, NICU admission, and post-NICU life. (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) Parents of children with anomalies, particularly those with more complex illness, often experience lower quality of life during and after NICU discharge.(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eThere is a large body of neonatal research about the parent experience of caring for a premature infant and strategies to improve the NICU experience and post-NICU transition for these families. (\u003cspan additionalcitationids=\"CR8 CR9\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). However, research about the experiences of parents of infants with congenital anomalies has been limited, and include studies about the psychological impact of prenatal diagnosis, (\u003cspan additionalcitationids=\"CR12 CR13 CR14 CR15 CR16\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) parental experiences after termination of pregnancy for lethal diagnoses, (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) and caring for infants with congenital anomalies into childhood (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). A description of parents\u0026rsquo; experiences across the trajectory from diagnosis to life after discharge home has not been adequately explored. This is of critical importance, as interventions to support parents may need to be tailored to their specific context. For example, bereavement support needs differ from the support needs of caregivers coping with a child with a chronic condition.\u003c/p\u003e \u003cp\u003eThe objective of our study was to describe the experiences of parents of infants with congenital anomalies in the prenatal period, during the NICU stay, and following the transition to caring for their child at home. Our goal was to identify strategies identified by parents that could improve family-centered care at various stages of this experience.\u003c/p\u003e"},{"header":"METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design\u003c/h2\u003e \u003cp\u003eWe conducted a qualitative, descriptive study to examine the experiences of parents of infants with a congenital anomaly. This study was reviewed by the Children\u0026rsquo;s Hospital of Wisconsin Institutional Review Board (IRB00002082) and deemed exempt.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eSampling Strategy\u003c/h2\u003e \u003cp\u003e We enrolled parents of children with anomalies who received care in our NICU between March 2022\u0026ndash;2023. We used purposive sampling to include children with a wide range of major congenital anomalies. Parents of multiples were included if at least one child had a diagnosis of an anomaly. We excluded parents of infants with isolated cardiac anomalies, infants discharging on home hospice, parents with known minimal NICU visitation, under the age of 18, and non-English speaking parents.\u003c/p\u003e \u003cp\u003eWe used a dual, prospective and retrospective screening strategy for enrollment. Our level IV NICU maintains a database of all patients admitted to the NICU that captures diagnoses including anomalies. For retrospective enrollment, we contacted parents of eligible patients discharged from our NICU within six months of study onset. Our NICU has a nurse call-back program for all patients discharged from the NICU; the nurse asked for permission to be contacted by our research team. Parents who agreed were contacted for formal consent. For prospective enrollment, we screened weekly for infants admitted to our NICU with major anomalies. Eligible parents were contacted about the study during their NICU stay once discharge was anticipated. For parents in both enrollment groups, our research team contacted them via telephone within six months of NICU discharge to schedule a video interview. We attempted to reach parents a total of 3 times. If both parents agreed to be interviewed, we gave them a choice to interview separately or together. Informed consent was obtained from parents for the interview as well as a retrospective chart review to assess their child\u0026rsquo;s NICU course.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cp\u003eInterviews were conducted and recorded via HIPAA compliant Zoom\u0026reg;. Interviews were conducted by three trained research team members (J.L., A.G., T.AZ.) who were healthcare professionals. A semi-structured interview guide was created by the researchers with experience in qualitative methodology (N.M., S.L.) with feedback from a former NICU parent who serves on our NICU parent advisory committee. The interview included questions to explore what parents found challenging and helpful during their journey. Parents received a gift card following interview completion. Demographic, NICU illness severity and post-discharge data were collected by retrospective chart review.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eWe used inductive qualitative content analysis to determine latent themes from parent interviews. We used Rev.com\u0026copy; to transcribe interviews verbatim. Research team members (J.L., A.G., T.AZ.) listened to the audio and compared them to the written transcripts for accuracy. Each transcript was reviewed and coded independently by two investigators (J.L., K.A.); K.A. used a software qualitative data management program (NVivo10) and J.L. coded data by hand. To ensure rigor, these investigators met regularly to discuss coding decisions, interpretation of the data, and emerging themes. Data collection was stopped after data saturation was reached. A qualitative methods expert (N.M.) independently reviewed the findings at multiple points throughout the analytic process. After all interviews were coded, investigators (J.L., K.A., N.M.) met to synthesize themes and subthemes.\u003c/p\u003e \u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003eAfter retrospective screening, we contacted 29 eligible parents who gave permission to be contacted;13 parents consented to the study, and 6 were interviewed. Through prospective screening, we identified 60 eligible patients; of these, 13 consented to the study and 12 were interviewed. In-depth, semi-structured interviews were conducted from March 2022 -2023 with 18 parents (13 mothers and 5 fathers). One interview included both parents. Interviews lasted 30 to 60 minutes.\u003c/p\u003e\n\u003cp\u003eParent and infant demographics are shown in \u003cstrong\u003eTable 1\u003c/strong\u003e. Most parents were white, married, and living in middle-income neighborhoods. Most infants were born after 34 weeks; one was an extremely preterm infant with a congenital anomaly, and three infants had multiple anomalies. Most infants received surgery in the NICU and had a long length of stay. One-third of infants were discharged with technologic support.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2\u003c/strong\u003e highlights three themes related to parental challenges, which are described in detail below.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLoss of a normal pregnancy\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eInadequate support from healthcare team at initial diagnosis\u003c/em\u003e\u003c/strong\u003e\u0026nbsp; \u0026nbsp;After being told about their child\u0026rsquo;s condition by their primary obstetrician, many were not told what this information meant for their child. Prior to being seen in a multidisciplinary fetal care center, parents dreceived inadequate information and support..Parents also described the stress of \u003cstrong\u003e\u003cem\u003ehaving to\u003c/em\u003e \u003cem\u003edecide about medical options\u003c/em\u003e\u003c/strong\u003e during pregnancy, often with time constraints to make these decisions, for example, decision to terminate the pregnancy, or deciding about fetal interventions. \u003cstrong\u003e\u003cem\u003eImpact on parent mental and emotional health\u003c/em\u003e\u003c/strong\u003e was significant, especially in mothers. Many mothers experienced guilt that they had caused their infant\u0026rsquo;s condition. One mother stated,\u003cem\u003e\u0026nbsp;\u0026ldquo;I think I struggled a little bit with feeling, what did I do wrong to cause this? Because I had COVID in my first trimester and I\u0026apos;m like, did that cause this and stuff?\u0026rdquo;\u003c/em\u003e (Mother 4). Some parents experienced depressive symptoms once\u003cem\u003e\u0026nbsp;\u003c/em\u003elearning about their child\u0026rsquo;s diagnosis and feared losing their child, especially when they had experienced prior pregnancy loss. They braced themselves for more bad news at every appointment. Parent mental health was also impacted by prognostic uncertainty and a loss of control, and knowing they were \u003cstrong\u003e\u003cem\u003enot having\u003c/em\u003e\u003c/strong\u003e \u003cstrong\u003e\u003cem\u003ea \u0026lsquo;normal\u0026rsquo; baby\u003c/em\u003e\u003c/strong\u003e as they compared their pregnancy with normative healthy baby expectations from their family and friends. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParenting a baby in the NICU\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParents found it frustrating when there was \u003cstrong\u003e\u003cem\u003einconsistent care and communication\u003c/em\u003e\u003c/strong\u003e, especially as rotating providers sometimes changed the care plan established by the previous provider, or when there was \u003cstrong\u003e\u003cem\u003elack of interdisciplinary communication\u003c/em\u003e\u003c/strong\u003e between different specialties. Similarly, when there was inconsistent nursing care, parents felt they were responsible for relaying important information about their child to the nurses for fear that something vital would be missed. \u0026ldquo;\u003cem\u003eIt\u0026apos;s frustrating because every two weeks we got set back a week because the new doctor would come in and wouldn\u0026apos;t feel comfortable sending us home, or wouldn\u0026apos;t feel comfortable moving forward with anything with her\u0026rdquo;\u003c/em\u003e (Father 2)\u003c/p\u003e\n\u003cp\u003eParents often felt \u003cstrong\u003e\u003cem\u003ehelplessness and isolation\u003c/em\u003e\u003c/strong\u003e in the NICU. They were not able to provide comfort to their child, such as after surgery or when their child was in pain, not able to make their child\u0026rsquo;s diagnosis better, and had to routinely trust others with their child\u0026rsquo;s care. Some parents feared connecting with other families in the NICU. \u0026ldquo;\u003cem\u003eBut there were families who didn\u0026apos;t get to take their kid home. And so part of me was like, that\u0026apos;s not my story and I can\u0026apos;t imagine that story. And so how dare me want to be friends with you and talk about my baby or my experience when you are dealing with something I cannot imagine? So to me that was like, I kind of felt okay with not having that immediate support.\u0026rdquo;\u003c/em\u003e (Mother 6)\u003c/p\u003e\n\u003cp\u003eParents struggled with \u003cstrong\u003e\u003cem\u003eknowing how to be a NICU parent\u003c/em\u003e\u003c/strong\u003e\u003cem\u003e.\u003c/em\u003e Holding and bonding with their baby was challenging due to medical equipment and underlying diagnosis, for example, gastroschisis, or a baby who underwent abdominal surgery. \u003cem\u003e\u0026nbsp;\u003cstrong\u003eFeeding in the NICU\u003c/strong\u003e\u003c/em\u003e was a challenge and feeding setbacks were particularly difficult. Mothers described the complexity and challenges of breastfeeding and pumping and the worries about their baby not tolerating feeds.\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany parents had to \u003cstrong\u003e\u003cem\u003ebalance parenting other children\u003c/em\u003e\u003c/strong\u003e and work while also trying to not disrupt the family unit. Parents felt guilty that they were spending more time with one child over the other..\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAdapting to life outside the NICU\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eHypervigilance and worries\u003c/em\u003e\u003c/strong\u003e referred to parents\u0026rsquo; descriptions of constantly worrying about their child. Parents had short-term worries related to sleeping, feeding, and their child getting sick, but also long-term worries about how their child would grow, develop, and feel about their condition. As one father described, \u0026ldquo;\u003cem\u003eI realize that his diagnosis at that point, and still today a little bit, is kind of a moving target. But just trying to get the perspective and then also understanding that time is what\u0026apos;s needed too. And that, while that\u0026apos;s hard, and I think that\u0026apos;s something that we\u0026apos;ve really struggled with, is that we won\u0026apos;t really know the extent of the damage or the kidney disease until some time has passed, and the surgery has had its chance to progress\u0026rdquo;\u003c/em\u003e (Father 4).\u003c/p\u003e\n\u003cp\u003eAt home, parents felt the \u003cstrong\u003e\u003cem\u003eburden of caregiving\u003c/em\u003e\u003c/strong\u003e and having less time for themselves and for their other children. Often, their child needed medical equipment assistance, rigorous feeding or therapy schedules, and multiple follow-up appointments. Some children had to be re-hospitalized which was particularly stressful. Some parents felt they were provided with unrealistic management plans that were impossible to accomplish. Others described how these burdens may affect their family long term. \u0026nbsp;Even with a routine, parents felt overwhelmed. As stated by one mother \u003cem\u003e\u0026ldquo;There\u0026apos;s medications I have to give him. Then, there\u0026apos;s physical therapy I should be doing with them. Then, there\u0026apos;s trying to do oral foods I should be doing with them. Then, maybe I should be getting him on the same exact off feeds from 7:00 to 9:00 in the morning and at night or something like that. There\u0026apos;s just so much to do to try and get in a good routine\u0026rdquo;\u003c/em\u003e (Mother 11). \u0026nbsp;\u003cstrong\u003e\u003cem\u003eAdjusting to life at home\u003c/em\u003e\u003c/strong\u003e was a challenge for most parents. They could no longer rely on 24/7 monitoring the NICU provided to ensure their child was safe at home. This was more difficult for first-time parents who were also learning basic newborn cares. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNumerous parents described \u003cstrong\u003e\u003cem\u003ethe financial impacts\u003c/em\u003e\u003c/strong\u003e related to their child\u0026rsquo;s healthcare, acknowledging that the cost of having a child admitted to a NICU was enormous. Some of the parents went from dual-income households to single-income households in order to provide care for their child. Parents also found it difficult to navigate the complexities of insurance coverage and reported spending a lot of time on the phone.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFathers vs. mothers\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eDuring the prenatal period, fathers described feeling helpless when they could see their wife was so uncomfortable and wanted to do more to help. After birth, fathers felt they spent less time with their child in the NICU compared to mom and therefore felt less comfortable handling their baby. Fathers often struggled to get paternity leave, and were often the parent who was responsible for taking care of infant\u0026rsquo;s siblings. Once discharged home, fathers found it challenging to balance their work while also trying to support their family.\u003c/p\u003e\n\u003cp\u003eParents described key strategies that improved their ability to be a parent and feel supported \u003cstrong\u003e(Table 3)\u003c/strong\u003e as below.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCreating comprehensive, consistent, and caring medical teams\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParents identified multiple examples of system and individual responses to demonstrate comprehensive and caring management. These included access to a \u003cstrong\u003e\u003cem\u003ecomprehensive prenatal care team\u003c/em\u003e\u003c/strong\u003e where families could meet with different specialists and have in-depth, honest conversations to better understand their child\u0026rsquo;s diagnosis. Having a primary contact within this center, such as their nurse coordinator, to help them navigate through their prenatal journey, was especially valued. In the NICU, parents described the \u003cstrong\u003e\u003cem\u003epower of having primary nurses\u0026nbsp;\u003c/em\u003e\u003c/strong\u003ewho knew their child and provided consistent and supportive care. They appreciated that primary nurses would advocate for their child, get their questions answered, and were available, night or day to answer questions about their baby. Parents felt they could trust these primary nurses with the care of their baby. It was powerful when doctors and other providers went above and \u003cstrong\u003e\u003cem\u003ebeyond medical care\u003c/em\u003e\u003c/strong\u003e, such as when residents held their baby on nights, when providers asked about parental well-being, and thought of creative ways to solve problems.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eProviding empathetic and accurate communication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eBalancing hope with reality \u0026nbsp;\u003c/em\u003e\u003c/strong\u003eParents appreciated when providers were honest in communicating both good and bad news while continuing to provide hope for their child. They found it helpful when providers acknowledged their emotions and helped assuage guilt. Receiving \u003cstrong\u003e\u003cem\u003econsistent messaging\u003c/em\u003e\u003c/strong\u003e about their child\u0026rsquo;s condition was valued as was communication using drawings when applicable and describing all possible scenarios. Parents appreciated proper \u003cstrong\u003e\u003cem\u003ecommunication etiquette\u003c/em\u003e\u003c/strong\u003e in which providers considered a parent\u0026rsquo;s emotional and physical state before delivering significant medical information about their child.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEngaging Families in NICU Care\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEncouraging parental presence in the NICU \u0026nbsp;\u003c/em\u003e\u003c/strong\u003eParents found early bedside involvement to be very beneficial. They appreciated the education they received from hands-on practice with nurses, which helped relieve their anxieties and better prepared them for discharge home. Some parents found it helpful to attend NICU rounds, as this gave them an opportunity to receive updates and advocate for their child. \u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eThe NICU offered \u003cstrong\u003e\u003cem\u003eresources to support families\u003c/em\u003e\u003c/strong\u003e. Examples of resources that parents found helpful were the Ronald McDonald house, parent/peer support groups, child life specialists, lactation, case managers, therapists, psychologists, and social workers. Parents desired \u003cstrong\u003e\u003cem\u003ebetter preparedness for NICU discharge,\u003c/em\u003e\u003c/strong\u003e including when to expect discharge (which often changed), and practical guidance about what to expect at home as opposed to paper handouts with discharge instructions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSupporting families after discharge home\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMost parents described the joys of seeing their baby\u0026rsquo;s developmental progress at home, therefore setting the expectation that being \u003cstrong\u003e\u003cem\u003ehome could be a developmental intervention\u003c/em\u003e\u003c/strong\u003e. \u003cstrong\u003e\u003cem\u003eMaking follow-up appointments easier\u003c/em\u003e\u003c/strong\u003e for families who are navigating multiple appointments is important. Parents also felt the loss of a primary team coordinating their child\u0026rsquo;s care and having easy access to all subspecialists like they did in the NICU, and often felt their pediatrician was not able to address all issues. \u003cstrong\u003e\u003cem\u003eProviding connection to other families\u003c/em\u003e\u003c/strong\u003e who had a child with a similar diagnosis was helpful for parents. Often, parents sought these connections on their own. These relationships gave parents a resource in which they could ask questions and learn more about their child\u0026rsquo;s diagnosis, while also giving them hope and emotional support. Some parents felt a lack of \u003cstrong\u003e\u003cem\u003emental health support\u003c/em\u003e\u003c/strong\u003e once leaving the NICU. All families in our NICU have access to a psychologist to learn how to ease parental stress. Once home, parents no longer had access to these services and felt they were on their own. Most parents relied on their personal support network, including family and friends, to help. \u003cstrong\u003e\u003cem\u003eHome nursing support\u003c/em\u003e\u003c/strong\u003e was helpful to many families that qualified for this service. Parents appreciated having access to medical care once discharged and saw the benefits to their child\u0026rsquo;s development and care.\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eIn this single-center study, we describe the experience of parents of children with congenital anomalies, from initial diagnosis, during the NICU hospitalization, and then following the discharge home. Our data provide insight into what resources and interventions may be helpful for families.\u003c/p\u003e \u003cp\u003eDuring the prenatal period, parents grieved the loss of a normal pregnancy in ways different from what has been reported for parents of premature infants. (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan additionalcitationids=\"CR23\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) For parents of premature infants, the loss of pregnancy results from pregnancy interruption and being \u0026lsquo;thrown into\u0026rsquo; parenthood coupled with significant maternal events and loss of control over these events. (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) For parents expecting a baby with an anomaly, there may be more time to prepare for parenthood, but this time is fraught with significant emotions from knowing and coping with the fetal diagnosis and a highly medicalized pregnancy where they may have to make decisions about medical interventions for themselves and/or their baby. A helpful prenatal intervention described by parents in this study was the referral to our multidisciplinary fetal concerns center, which has been a well-established model of perinatal care for pregnancies complicated by fetal anomalies. (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) Key components of this model include providing multidisciplinary communication, understanding the family\u0026rsquo;s goals and values, and providing treatment recommendations based on those goals. However, most families will learn about the fetal diagnosis at their primary OB office where access to a multidisciplinary team specializing in these cases may not be available at first. Providers at these centers should take into consideration the enormous initial impact of a fetal diagnosis on families and focus on providing psychological support in addition to medical information while establishing referral to a multidisciplinary center. Providers at fetal centers should take into consideration that making time-sensitive decisions can be intensely stressful for families and help them understand and process information that can help them make these decisions. Once baby is born and in the NICU, NICU providers need to recognize the journey these parents have been through. Reviewing all relevant prenatal data about diagnosis, family support, and prenatal conversations about extent of intensive care in accordance with family\u0026rsquo;s goals provides a starting ground for conversations with families and establishes continuity of care.\u003c/p\u003e \u003cp\u003e While in the NICU, parents often struggled to navigate parenthood in ways similar to those described for parents of premature infants such as how to hold, bond, feed, and be present for their child. (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) What may be different for parents of children with anomalies is a heightened sense of isolation, as many of these individual diagnoses are rare, and parents have more worry about their child\u0026rsquo;s comfort as many of these children require surgical intervention. (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e) Early and ongoing inclusion of parents in their child\u0026rsquo;s NICU care is critical to support parents psychologically and to prepare them for transitions in care (\u003cspan additionalcitationids=\"CR26 CR27\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). To better support parents of infants with anomalies in the NICU, it may be especially important to validate their experience of parenthood, include their opinions in clinical decision-making, and empower them to perform routine parenting tasks in the NICU environment despite differences in equipment or anatomy that may require modifications to those activities.\u003c/p\u003e \u003cp\u003eParents desired effective interdisciplinary communication and valued empathy, humility, and personal connections with their medical team. While these qualities should be applied to all NICU families, specifically for parents of infants with a congenital anomaly, good interdisciplinary communication is key. Interdisciplinary communication should occur at regular intervals and should include not only discussions about medical plans but also how teams will communicate these plans with families. Healthcare teams must discuss what will be communicated to families and consider the parents\u0026rsquo; readiness to receive this communication. Routine and required education for the NICU team and subspecialist providers about best practices for communicating with families could improve their communication skills and ultimately help families feel heard and acknowledged as partners in care.\u003c/p\u003e \u003cp\u003eAfter discharge, many parents describe the excitement of being home with their child and the joy they experienced with their child\u0026rsquo;s developmental gains. However, some felt that things were not necessarily easier when home. We previously reported that parents of children with congenital anomalies have a lower quality of life after discharge than parents of preterm infants. (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) This study provides insight into why this occurs based on parents\u0026rsquo; descriptions of viewing their child as fragile, the stress of follow-up appointments and therapies, and a lack of resources. To help with this transition, families need a collaborative multidisciplinary support system once discharged home. (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e) Areas of need that emerged from parents were an improvement in appointment scheduling and number of follow-up appointments, more expansive parent peer resources, continued access to parent mental health support, and greater availability of home nursing support.\u003c/p\u003e \u003cp\u003eWhile many changes can be made within the healthcare system to improve care for families of children with congenital anomalies, some changes need to be implemented at the societal level.These strategies include greater awareness and support for complicated pregnancies especially mental health support, affordable healthcare, paid family leave, expanded childcare options, easier access to supplies/equipment for children with special needs and increased availability of respite care. Previous studies have acknowledged the impact societal demographics have on families care in the NICU, especially how challenges are exacerbated for families of color and low socioeconomic status. (\u003cspan additionalcitationids=\"CR28 CR29 CR30\" citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e) There is a need to improve collaboration between the healthcare system and community agencies to ensure that parents have seamless transitions and support as they navigate caring for their child at home.\u003c/p\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eStudy Limitations\u003c/h2\u003e \u003cp\u003eOur study has several limitations. As a small, single-center study conducted during the COVID-19 pandemic, our ability to recruit a diverse sample of parents from a variety of racial, cultural, and socioeconomic backgrounds was limited. Parents in this study had access to care at a multidisciplinary fetal concerns center. Those cared for within healthcare organizations without this resource may require support that may differ from that described by those we interviewed. Parents who participated in our study were highly involved in their child\u0026rsquo;s care and were frequently present in the NICU. Therefore, parents who may have barriers to their involvement in care should be targeted in future studies. Understanding difficulties that impede one\u0026rsquo;s ability to be part of NICU care is a critical area of inquiry that has not been well explored in the literature. Despite these limitations, this study highlights a more comprehensive examination of parent\u0026rsquo;s experiences from pregnancy to care at home.\u003c/p\u003e \u003c/div\u003e"},{"header":"CONCLUSIONS","content":"\u003cp\u003eParents of infants with anomalies experience a complicated prenatal journey that has a significant impact on their mental health and their identity as parents. Parents\u0026rsquo; sense of isolation, worries about keeping their baby comfortable, and need for greater support after discharge home are key areas in which interventional strategies are needed. A consistent, caring medical team starting in the prenatal period, recognition of these parents\u0026rsquo; unique NICU needs, a focus on advocacy and consistent cross-disciplinary communication, early and ongoing family engagement in the NICU, and improving systems of support following discharge are key ways to improve the experience of these families. Future research should aim to develop and test supportive interventions in partnership with NICU families who are experts in the needs of this population.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003eFunding:\u003c/h2\u003e \u003cp\u003eThis study was internally supported by funds from the Department of Pediatrics, Children\u0026rsquo;s Wisconsin\u003c/p\u003e\u003ch2\u003eAuthor Contributions:\u003c/h2\u003e \u003cp\u003eAll authors contributed to the study design, investigation, and preparation of the manuscript\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eConflicts of Interest and Financial Support\u003c/strong\u003e: The authors have no conflicts of interest or financial disclosures.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eData sharing statement\u003c/strong\u003e \u003cp\u003eData from the study are not available for sharing\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eAcknowledgements\u003c/h2\u003e \u003cp\u003eThe research team is grateful to Monica McLeod, former NICU parent, who reviewed the study design and interview guide and provided critical feedback. We are grateful to all the parents who participated in the research study and thank them for their contributions.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eHow Infants Die in the Neonatal Intensive Care Unit: Trends From 1999 Through 2008 | Critical Care Medicine | JAMA Pediatrics | JAMA Network [Internet]. [cited 2021 Aug 4]. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://jamanetwork.com/journals/jamapediatrics/article-abstract/1107554\u003c/span\u003e\u003cspan address=\"https://jamanetwork.com/journals/jamapediatrics/article-abstract/1107554\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and Costs of Health Care Use of Children With Medical Complexity. Pediatrics. 2012;130(6):e1463\u0026ndash;70.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAcharya K, Rholl E, Malin K, Malnory M, Leuthner J, Leuthner SR, et al. Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care. The Journal of Pediatrics. 2022;245:39\u0026ndash;46.e2.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWelke N, Lagatta J, Leuthner S, Acharya K. Three-Year Post-Neonatal Intensive Care Unit Health Care Utilization Among Infants with Congenital Anomalies. The Journal of Pediatrics. 2024;265:113779.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOftedal A, Bekkhus M, Haugen G, Hjemdal O, Czajkowski NO, Kaasen A. Long-Term Impact of Diagnosed Fetal Anomaly on Parental Traumatic Stress, Resilience, and Relationship Satisfaction. 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MCN: The American Journal of Maternal/Child Nursing. 2007;32(5):272.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHaward MF, Lantos J, Janvier A, for the POST Group. Helping Parents Cope in the NICU. Pediatrics. 2020;145(6):e20193567.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eUveges MK, Hamilton JB, Pados BF, Thayer WM, Hinds PS, Nolan MT. Being a \u0026ldquo;Good Parent\u0026rdquo; to a NICU Infant With a Major Congenital Anomaly. Advances in Neonatal Care. 2024;24(1):14.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFeehan K, Kehinde F, Sachs K, Mossabeb R, Berhane Z, Pachter LM, et al. Development of a Multidisciplinary Medical Home Program for NICU Graduates. Matern Child Health J. 2020;24(1):11\u0026ndash;21.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDiBari JN, Rouse L. Parent Perspectives: Part 2\u0026mdash;Considerations for the Transition Home Post-NICU Discharge. Children. 2023;10(12):1835.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWitt RE, Malcolm M, Colvin BN, Gill MR, Ofori J, Roy S, et al. Racism and Quality of Neonatal Intensive Care: Voices of Black Mothers. Pediatrics. 2022;150(3):e2022056971.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSigurdson K, Mitchell B, Liu J, Morton C, Gould JB, Lee HC, et al. Racial/Ethnic Disparities in Neonatal Intensive Care: A Systematic Review. Pediatrics. 2019;144(2):e20183114.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSigurdson K, Profit J, Dhurjati R, Morton C, Scala M, Vernon L, et al. Former NICU Families Describe Gaps in Family-Centered Care. Qual Health Res. 2020;30(12):1861\u0026ndash;75.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSigurdson K, Morton C, Mitchell B, Profit J. Disparities in NICU quality of care: a qualitative study of family and clinician accounts. J Perinatol. 2018;38(5):600\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eProfit J, Gould JB, Bennett M, Goldstein BA, Draper D, Phibbs CS, et al. Racial/Ethnic Disparity in NICU Quality of Care Delivery. Pediatrics. 2017;140(3):e20170918.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTable 1. Parent and infant demographic and clinical characteristics (n=18 parents and 13 infants)\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParent Demographics (n=18)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003eN (%)*\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eAge range, years\u003c/p\u003e\n \u003cp\u003e18-24\u003c/p\u003e\n \u003cp\u003e25-34\u003c/p\u003e\n \u003cp\u003e35-44\u003c/p\u003e\n \u003cp\u003eUnknown\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2 (11)\u003c/p\u003e\n \u003cp\u003e11 (61)\u003c/p\u003e\n \u003cp\u003e3 (17)\u003c/p\u003e\n \u003cp\u003e2 (11)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e13 (72)\u003c/p\u003e\n \u003cp\u003e5 (28)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eRace\u003c/p\u003e\n \u003cp\u003eCaucasian White\u003c/p\u003e\n \u003cp\u003eAsian\u003c/p\u003e\n \u003cp\u003eHispanic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e16 (89)\u003c/p\u003e\n \u003cp\u003e1 (5.5)\u003c/p\u003e\n \u003cp\u003e1 (5.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eEmployment\u003c/p\u003e\n \u003cp\u003eEmployed\u003c/p\u003e\n \u003cp\u003eUnemployed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e12 (67)\u003c/p\u003e\n \u003cp\u003e6 (33)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eMarital Status\u003c/p\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003cp\u003ePartnership, not married\u003c/p\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e16 (89)\u003c/p\u003e\n \u003cp\u003e1 (5.5)\u003c/p\u003e\n \u003cp\u003e1 (5.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eHas other children\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e11 (61)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eReligion\u003c/p\u003e\n \u003cp\u003eChristian\u003c/p\u003e\n \u003cp\u003eJehovah\u0026rsquo;s Witness\u003c/p\u003e\n \u003cp\u003eDoes not identify with a religion\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e10 (55.5)\u003c/p\u003e\n \u003cp\u003e1 (5.5)\u003c/p\u003e\n \u003cp\u003e7 (39)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eMedian household income based on zip code data (based on 2021 USD):\u003c/p\u003e\n \u003cp\u003e\u0026lt;$50,000\u003c/p\u003e\n \u003cp\u003e$50,000-$75,000\u003c/p\u003e\n \u003cp\u003e$75,000-$100,000\u003c/p\u003e\n \u003cp\u003e\u0026gt;$100,000\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1 (5.5)\u003c/p\u003e\n \u003cp\u003e10 (55.5)\u003c/p\u003e\n \u003cp\u003e4 (22)\u003c/p\u003e\n \u003cp\u003e3 (17)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eTime of interview from NICU discharge, median (IQR), months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e3 (2-5) months\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInfant characteristics (n=13)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003en=13 (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eGestational age\u003c/p\u003e\n \u003cp\u003e22w0d-27w6d\u003c/p\u003e\n \u003cp\u003e28w0d-33w6d\u003c/p\u003e\n \u003cp\u003e34w0d-36w6d\u003c/p\u003e\n \u003cp\u003e\u0026gt;37w0d\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1 (8)\u003c/p\u003e\n \u003cp\u003e1 (8)\u003c/p\u003e\n \u003cp\u003e5 (38)\u003c/p\u003e\n \u003cp\u003e6 (46)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eAge of child at interview, median (IQR), months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e4.5 (3-7.75) months\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e5 (38)\u003c/p\u003e\n \u003cp\u003e8 (62)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eTwin birth\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e2 (15)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eInfant Anomalies\u003c/p\u003e\n \u003cp\u003eCongenital diaphragmatic hernia\u003c/p\u003e\n \u003cp\u003eGastroschisis\u003c/p\u003e\n \u003cp\u003eTracheoesophageal fistula/Esophageal atresia\u003c/p\u003e\n \u003cp\u003eAmniotic band syndrome\u003c/p\u003e\n \u003cp\u003eFacial femoral syndrome\u003c/p\u003e\n \u003cp\u003eHydronephrosis\u003c/p\u003e\n \u003cp\u003eIntestinal atresia\u003c/p\u003e\n \u003cp\u003eMyelomeningocele\u003c/p\u003e\n \u003cp\u003eOmphalocele\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e3\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eMultiple anomalies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e3 (23)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eLOS in the NICU, median (IQR), days\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e46 (31-69) days\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eReceived mechanical ventilation\u003c/p\u003e\n \u003cp\u003eDuration of mechanical ventilation, median (IQR), days\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e11 (85)\u003c/p\u003e\n \u003cp\u003e8 (2-14) days\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eECMO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e1 (7.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eHad surgeries while in the NICU\u003c/p\u003e\n \u003cp\u003eNumber of OR trips, median (IQR)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e12 (92)\u003c/p\u003e\n \u003cp\u003e2 (1-4)\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 58.6538%;\"\u003e\n \u003cp\u003eNeeded discharge supports\u003c/p\u003e\n \u003cp\u003eHome Oxygen\u003c/p\u003e\n \u003cp\u003eG-tube\u003c/p\u003e\n \u003cp\u003eVP Shunt\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 41.3462%;\"\u003e\n \u003cp\u003e4 (30)\u003c/p\u003e\n \u003cp\u003e2 (15)\u003c/p\u003e\n \u003cp\u003e2 (15)\u003c/p\u003e\n \u003cp\u003e1 (7.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e*Continuous variables are presented as medians with interquartile ranges\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIQR=interquartile range; LOS= length of stay; ECMO= extracorporeal membrane oxygenation; G-tube= gastrostomy tube; VP shunt= ventriculoperitoneal shunt\u003c/p\u003e\n\u003cp\u003eTABLE 2: Parents\u0026rsquo; Experiences of their Child\u0026rsquo;s Anomaly from Initial Diagnosis, Birth Hospitalization and Discharge Home: Themes, Subthemes and Exemplar Quotes\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"871\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 192px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eThemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSubthemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eQuotes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 192px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eLoss of a normal pregnancy\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eInadequate support from the healthcare team at initial diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Here\u0026apos;s what\u0026apos;s wrong with your baby. Any questions?\u0026quot; And I was like, \u0026quot;Well, what are questions I should ask? Because I don\u0026apos;t know anything.\u0026rdquo; (Father 3)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eHaving to decide about medical procedures\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So from her diagnosis and to the date of the surgery, we had in total six weeks to make a decision on whether or not we to go through with the (fetal) surgery\u0026rdquo; (Mother 10)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eImpact on mental health\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I ended up staying in bed for about a month and a half because I was just so depressed because I\u0026apos;m like, well, I\u0026apos;m going to lose her anyways and if I get attached it\u0026apos;s literally going to break me. I couldn\u0026apos;t go through another loss.\u0026rdquo; (Mother 2)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eNot a \u0026ldquo;normal\u0026rdquo; baby\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So she brought a gift for the baby, and all the clothes were zero to three months. I see the clothes and I just cried for half hour. I couldn\u0026apos;t... She\u0026apos;s like, \u0026quot;What did I do wrong?\u0026quot; I had to explain the baby could not wear them because the baby will be born with a special needs. He cannot wear any clothes. He probably has to stay naked for three months.\u0026rdquo;\u003cins cite=\"mailto:Natalie%20Susan%20McAndrew\" datetime=\"2023-12-29T14:02\"\u003e\u0026nbsp;\u003c/ins\u003e(Mother 7)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" valign=\"top\" style=\"width: 192px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eParenting a baby in the NICU\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eInconsistent care and communication/Lack of interdisciplinary communication\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And the communication between the Children\u0026apos;s surgery team and I don\u0026apos;t even know who it was who came back to my labor and delivery room, they were completely different stories. They would do their stuff. They wouldn\u0026apos;t even talk to anybody. They would come, and do their stuff, and they would leave, and then, the nurse would come and be like, \u0026quot;So what\u0026apos;d they say?\u0026quot; And it\u0026apos;s like, \u0026quot;Well, they didn\u0026apos;t really say anything to me, either.\u0026quot; So then, they\u0026apos;re like, \u0026quot;Well, let me find out.\u0026quot; So then, she was texting, and then we\u0026apos;d have to wait to find out information. So communication, amongst the different teams, I think, would be greatly beneficial.\u0026rdquo; (Father 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eIsolation and Helplessness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Most challenging on all these times was not knowing what pain he was in, especially after the surgery. What was the level of pain, how he handled that, how we were holding him.\u0026rdquo; (Mother 7)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eKnowing how to be a NICU parent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;This is going to be a funny way to put it, but NICU etiquette. We weren\u0026apos;t sure what we could and couldn\u0026apos;t do, what we could and couldn\u0026apos;t ask. So it took weeks for us to hold her at first because we weren\u0026apos;t even sure that that was something we could do or ask\u0026rdquo; (Mother 10)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eFeeding in the NICU\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003eI couldn\u0026apos;t comprehend how he was going to be okay if he couldn\u0026apos;t eat anything. I don\u0026apos;t know, so I feel like that would\u0026apos;ve been ... I feel like just that needed to be explained to me that he was getting stuff through the IV so he was going to be fine. Because the first thing they teach you is they\u0026apos;ll want to nurse right away.\u0026rdquo; (Mother 8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eBalancing life outside the NICU\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Because she had all the care that she could need in that moment (in the NICU). And our son (at home) had experienced weeks upon weeks without both of his parents, and that\u0026apos;s something that has never happened for him. And so, it just felt like he needed us and she almost needed that space to grow. and I know it\u0026apos;s what I needed.\u0026rdquo; (Mother 10)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 192px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAdapting to life outside the NICU\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eHypervigilance and worries\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;But that fear of is he going to develop? Is he going to develop on time? Is he going to continue to eat? Is he going to continue to gain weight? There\u0026apos;s just so many unknowns.\u0026rdquo; (Mother 13)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eBurden of caregiving\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;\u003c/em\u003e\u003cem\u003eIn a perfect world, yes, she would wear her brace 23 hours a day and she would wear the band 23 hours a day, and there\u0026apos;s just no way to physically\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eget to that. The list of stretches and massages and just everything just keeps growing and growing and growing.\u0026rdquo; (Father 1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eAdjusting to life at home\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Probably what was the most nerve-wracking thing was going from an environment where their vitals are being constantly monitored 24/7 to going home and then now you\u0026apos;re like, how do I know he is alive? Like I said, we\u0026apos;re first time parents, so we didn\u0026apos;t have a sense of normal for how to take care of a normal baby and a normal situation at home.\u0026rdquo; (Mother 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003eFinancial impact\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 449px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It\u0026apos;s a ridiculous amount of money that would\u0026apos;ve been out of pocket, even with our insurance, so that was challenging.\u0026rdquo; (Mother 8)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 3: Potential Strategies/Interventions to Improve the Perinatal and Neonatal Experience of Parents of Children with Anomalies at the Health Care and Societal Levels: Themes, Subthemes and Exemplar Quotes\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"858\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eThemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSubthemes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eQuotes\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 858px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHEALTHCARE LEVEL\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eCreating comprehensive, consistent, and caring medical teams\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eComprehensive prenatal care team\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Once we arrived at Children\u0026apos;s (Fetal Concerns Center), just where we were at, the fact that we were talking with a NICU doctor, who even in that case, her whole deal is difficult pregnancies that end up in the NICU as opposed to just a maternal fetal specialist who sees all the stuff, but then just kind of talks you through everything that\u0026apos;s going on.\u0026rdquo; (Father 1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003ePower of primary NICU nurses\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And they were just very, anytime I had a question or anytime I had a concern, they were like, \u0026quot;Just advocate for yourself. Just ask the question, just advocate for yourself.\u0026quot; And so I did feel like that was good advice for me because I think if they wouldn\u0026apos;t have kept saying these things to me, I might have not asked as many questions or not said, \u0026quot;No, this part is really important to me.\u0026quot; (Mother 6)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eBeyond medical care\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;The NICU doctors really made us feel so supported, validated, included. I\u0026apos;m not a medical professional, but how they all were so welcoming that I stood in on rounds, they valued my opinion. That was a huge feeling to be validated. \u0026ldquo;(Mother 13)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eProviding empathetic and accurate communication\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eBalancing hope with reality\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Everybody was really transparent with us, but in a way, where it didn\u0026apos;t make you worry, which was nice, because it was one of those things, where I think you just gear yourself, when you\u0026apos;re in that field, to be able to provide good and bad news, with a level of control, that doesn\u0026apos;t put you in a situation, where you\u0026apos;re making the family anxious, when it comes to bad stuff, or making the family too happy, when you\u0026apos;re like, \u0026quot;Hey, I got good news for you, but there could be some variables here, that are bad.\u0026quot; Where you build them up, and then find out the bad.\u0026rdquo; (Father 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eConsistent messaging\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So what the woman came and told me was happening with my baby was world\u0026apos;s different than what actually was happening. So that was a really hard point because you just took my baby from me and I can\u0026apos;t do anything about it. And now for that first part it was a little nerve wracking, well is that really what\u0026apos;s going on? Or are you sure? Can I talk to the actual person? It just put me on edge a little bit, especially when I couldn\u0026apos;t hear the firsthand account myself.\u0026rdquo; (Mother 6)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eCommunication etiquette\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;But, some self-awareness, I would say, of if my wife is behind a curtain and she\u0026apos;s been up since 3:00 AM feeding him in the NICU and you come in and you tell her from behind a curtain that he\u0026apos;s going to need a kidney transplant most likely without any sort of backing, whether it\u0026rsquo;s data, or a test, or whatever, and you lay the groundwork for worst-case scenario right out of the gate, it\u0026rsquo;s incredibly overwhelming and incredibly draining, one, for a new mom who literally just delivered 24 hours ago or 48 hours ago, to just a family to hear that things aren\u0026rsquo;t what you thought it was.\u0026rdquo; (Father 4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eEngaging families in NICU care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eEncouraging parent presence in the NICU\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;\u003c/em\u003e\u003cem\u003eWe didn\u0026apos;t hesitate to get our hands in there, and help out with cares, and help out with everything, to learn the what-to-dos, and what to don\u0026apos;ts, and stuff like that, which was, I think the biggest benefit that we could have taken out of the NICU stay, was to do that. Because when we brought him home, it wasn\u0026apos;t as scary, as I think it could have been\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e(Father 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eResources to support families\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Definitely, take full advantage of all the different resources that are there, because there are so many different resources. Me, personally, I didn\u0026apos;t spend the night in the NICU. I went to Ronald McDonald every night and slept so that I could be there mentally every day. And that helped me.\u0026rdquo; (Mother 11)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eBetter discharge preparedness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;You leave there with a stack of handouts and you\u0026apos;re like, \u0026quot;I don\u0026apos;t even know what to do with this.\u0026quot; That\u0026apos;s probably helpful for some people, but it was just very overwhelming, because that was a lot of paper.\u0026rdquo; (Mother 4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eSupporting families after discharge home\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eHome as a developmental \u0026lsquo;intervention\u0026rsquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So the last couple weeks have been (at home), have been the most exciting with him. He has been smiling so much, and it just makes my heart happy. It\u0026rsquo;s the sweetest. And he\u0026rsquo;s been cooing and talking and engaging more. And seeing that transition, I mean, it was almost, it was overnight. He just went from being a newborn to all of a sudden he\u0026rsquo;s more engaged and he is looking at us, and he\u0026rsquo;s smiling and he\u0026rsquo;s reacting to us. And that\u0026rsquo;s been so fun. And I mean, it is crazy to go from the newborn stage. Now you have this baby that\u0026rsquo;s developing a personality and stuff. That\u0026rsquo;s been really fun to see. And he really is a generally very happy baby. He has his moments, but as they all do, but he\u0026rsquo;s very happy.\u0026rdquo;(Mother 4)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003eMaking follow-up easier\u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So it was PT, OT, general surgery, cardiology, dermatology, ortho hand, ortho leg, \u0026quot;Oh, you need a renal ultrasound. Oh you need a echocardiogram. Oh we need X-rays. We need you do a sweat test for her sister. We need you to do blood work for her. We need a weight check. We need a pediatrician check.\u0026quot; I would literally just drive them around to appointment after... I\u0026apos;d take one and leave the other one and be here and go there.\u0026rdquo; (Mother 1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eProviding connection to other families\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I nannied for a family and the son had (the same diagnosis) as well, and so right away I was able to reach out to the mom, and that was very helpful. We texted pretty much every day, and it was just very helpful because she understood everything, so that was super amazing. And if anything comes up, I can always reach out to her and stuff, so that was really helpful.\u0026rdquo; (Mother 8)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eSupporting parent mental health after discharge\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003eThere\u0026apos;s no one asking you every day if you\u0026apos;re okay, or stopping in and checking on your mental health like there was in the hospital. So, the March of Dimes was great while there, but it would almost be great if there was a March of Dimes outside of that hospital environment to say, hey, we need to check up on this person because this is how long their stay was until they tell us not to do it anymore.\u0026rdquo; (Mother 2)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eAdequate home nursing support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So one thing that they advise was having the nurses come into the house, the house calls, and just to check on him and work with him. And that helped a lot because with him having a huge cast was very hard to move or do... He couldn\u0026apos;t do tummy time. So he couldn\u0026apos;t do a lot of things. He couldn\u0026apos;t even sleep well because even the back was uncomfortable to sleep. But they came and they worked with him with hands and then legs and head control. And right now, he\u0026apos;s doing very good.\u0026rdquo; (Mother 7)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 858px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eSOCIETAL LEVEL\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eSupport for complicated pregnancies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eCreating awareness about complicated pregnancies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;We have friends that have had kids, and they\u0026apos;re like, \u0026quot;Oh, my God. I love being pregnant. It\u0026apos;s so much fun. I just feel like I glow, and I love the feeling I have growing my child,\u0026quot; and stuff like that. Whereas, for us, it was like, \u0026quot;No, we\u0026apos;re on pins and needles constantly. When\u0026apos;s the next bit of bad news coming?\u0026quot; (Father 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eSupport for NICU care\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eAffordable healthcare\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;But our deductible last year is 8000. This year, we\u0026rsquo;ve already hit our deductible. In two years, it\u0026rsquo;s $16,000 for medical bills.\u0026rdquo; (Mother 1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003ePaid family leave\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I used probably a bunch of vacation and stuff, that I could have obviously not had to use, had I had the opportunity to do the FMLA leave, but with that comes less pay, obviously, because it\u0026rsquo;s unpaid. But still, it would\u0026rsquo;ve been one of those things where I wasn\u0026rsquo;t constantly scratching the bottom of the barrel, to try to make sure I had time off, for one of A\u0026rsquo;s procedures, or something like that. Again, after a month, or a month to a month and a half of it, they finally started to get the picture of, \u0026ldquo;Hey, this isn\u0026rsquo;t a couple of days thing.\u0026rdquo; We ended up being in the NICU, for five months, I think, it was.\u0026rdquo;\u0026nbsp;(Father 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 123px;\"\u003e\n \u003cp\u003eSupport for children (and families) with medical needs\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eChildcare options\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;We do have them go to daycare full-time, and E\u0026rsquo;s daycare has been very accommodating and willing to learn how to take care of him, and above and beyond, like I never would have expected that they would. They learned how to vent his G-tube when he gets fussy and how to do dressing changes if he\u0026rsquo;s leaking, and just are very communicative and willing to try new things, which I think is not a standard daycare experience, so I\u0026rsquo;m very appreciative.\u0026rdquo; (Mother 5)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eEasier access to supplies/equipment for children with special needs\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;They can\u0026rsquo;t go on bouncers because they don\u0026rsquo;t have core strength at all. They can\u0026rsquo;t sit in any of those\u0026hellip; we had to buy a special highchair so that they can recline back because they have to have that.\u0026rdquo; (Mother 1)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003eAvailability of respite care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 536px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;There\u0026apos;s medications I have to give him. I should probably get him on a sleep routine now that he is almost six months old. Then, there\u0026apos;s physical therapy I should be doing with them. Then, there\u0026apos;s trying to do oral foods I should be doing with them. Then, maybe I should be getting him on the same exact off feeds from 7:00 to 9:00 in the morning and at night or something like that. There\u0026apos;s just so much to do to try and get in a good routine. Then, throwing a three-year-old in there\u0026hellip;\u0026rdquo; (Mother 11)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"journal-of-perinatology","isNatureJournal":false,"hasQc":false,"allowDirectSubmit":false,"externalIdentity":"jp","sideBox":"Learn more about [Journal of Perinatology](http://www.nature.com/jp/)","snPcode":"41372","submissionUrl":"https://mts-jper.nature.com/cgi-bin/main.plex","title":"Journal of Perinatology","twitterHandle":"@jperinatology","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"ejp","reportingPortfolio":"Nature AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"congenital anomalies, parent experience, birth defect, NICU experience","lastPublishedDoi":"10.21203/rs.3.rs-4980057/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4980057/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eObjective\u003c/strong\u003e: To describe the parent experience of having an infant with a congenital anomaly from prenatal diagnosis. NICU, and post-NICU care\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStudy design\u003c/strong\u003e: Qualitative study\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eWe interviewed 18 parents (13 mothers, 5 fathers) whose children were in our NICU to explore challenges in care and identify strategies to improve care. During the prenatal period, key challenges were inadequate initial support, having to decide about medical procedures, impact on mental health, and loss of a “normal” baby. In the NICU, challenges were lack of interdisciplinary communication, isolation, and knowing how to parent. After discharge home, challenges were hypervigilance, burden of caregiving, adjusting to life at home, and financial impact.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion: \u0026nbsp;\u003c/strong\u003eParents of infants with anomalies experience significant stress and isolation after initial diagnosis and NICU care.\u003cstrong\u003e \u003c/strong\u003eKey interventions helpful to families were empathetic and consistent healthcare teams; consistent communication,engagement in NICU care, and ongoing support after discharge home.\u003c/p\u003e","manuscriptTitle":"Voices of Parents of Children with Major Congenital Anomalies: \nThemes from Initial Diagnosis, NICU Hospitalization, and Discharge Home","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-09-27 11:28:11","doi":"10.21203/rs.3.rs-4980057/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"revise","date":"2024-11-07T14:32:20+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"This content is not available.","date":"2024-11-03T12:32:17+00:00","index":2,"fulltext":"This content is not available."},{"type":"reviewerAgreed","content":"This content is not available.","date":"2024-11-03T11:43:37+00:00","index":2,"fulltext":"This content is not available."},{"type":"editorInvitedReview","content":"This content is not available.","date":"2024-09-08T16:06:16+00:00","index":1,"fulltext":"This content is not available."},{"type":"reviewerAgreed","content":"This content is not available.","date":"2024-09-05T16:24:27+00:00","index":1,"fulltext":"This content is not available."},{"type":"reviewersInvited","content":"","date":"2024-08-28T19:33:59+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-08-27T12:09:08+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-08-26T20:02:20+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Perinatology","date":"2024-08-26T20:02:20+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-perinatology","isNatureJournal":false,"hasQc":false,"allowDirectSubmit":false,"externalIdentity":"jp","sideBox":"Learn more about [Journal of Perinatology](http://www.nature.com/jp/)","snPcode":"41372","submissionUrl":"https://mts-jper.nature.com/cgi-bin/main.plex","title":"Journal of Perinatology","twitterHandle":"@jperinatology","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"ejp","reportingPortfolio":"Nature AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"584fc64f-a1da-4a7b-a5b1-02cc24b5c158","owner":[],"postedDate":"September 27th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[{"id":36742538,"name":"Health sciences/Health care/Health services"},{"id":36742539,"name":"Health sciences/Health care/Patient education"}],"tags":[],"updatedAt":"2025-03-05T08:05:43+00:00","versionOfRecord":{"articleIdentity":"rs-4980057","link":"https://doi.org/10.1038/s41372-025-02255-8","journal":{"identity":"journal-of-perinatology","isVorOnly":false,"title":"Journal of Perinatology"},"publishedOn":"2025-03-05 05:00:00","publishedOnDateReadable":"March 5th, 2025"},"versionCreatedAt":"2024-09-27 11:28:11","video":"","vorDoi":"10.1038/s41372-025-02255-8","vorDoiUrl":"https://doi.org/10.1038/s41372-025-02255-8","workflowStages":[]},"version":"v1","identity":"rs-4980057","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4980057","identity":"rs-4980057","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}