A Qualitative Study Investigating the Barriers and Enablers to Supporting Breastfeeding for Babies with Down Syndrome

A Qualitative Study Investigating the Barriers and Enablers to Supporting Breastfeeding for Babies with Down Syndrome | 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 Research Article A Qualitative Study Investigating the Barriers and Enablers to Supporting Breastfeeding for Babies with Down Syndrome Jenny Davies, Sally Dowling This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9211349/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Background Down Syndrome is the most common genetic condition in the UK. Breastfeeding has immediate and lifelong benefits, yet assumptions and barriers thwart it in babies with Down Syndrome. This primary research study aimed to explore maternal experiences, investigating enablers and barriers and how they may be overcome. Methods Using a multiple case study methodology, three mothers who either breastfed or attempted to breastfeed their baby with Down Syndrome participated in a semi-structured interview which were transcribed and analysed using reflexive thematic analysis. Results Of the three mothers interviewed, one had transitioned to formula, one was mixed feeding, and one had successfully breastfed. Two overarching themes were identified, each with three subthemes ‘Professionals Attitudes are Key’, and ‘A Huge Emotional Upheaval’. Mothers’ experiences were mixed, from negative and detrimental comments to highly engaged and supportive professionals. Two mothers were experienced at breastfeeding their prior children, but despite their knowledge, found accessing specialist expertise challenging. One mother was primiparous, her experience lacking emotional support and professional knowledge. Conclusions Despite World Health Organisation guidelines and the UNICEF Baby Friendly Initiative guidelines, there appears to be a gap facilitating breastfeeding babies with Down Syndrome, a specific population where effective implementation of the Baby Friendly Initiative may be transformative in both short- and long-term health and development for babies with Down Syndrome. Maternal perseverance and increased professionals’ expert support are key enablers. Access to specialist knowledge at diagnosis via specific care pathways and effective implementation of the Baby Friendly Initiative for mothers with a baby with Down Syndrome would optimise enablers and minimise barriers. Breastfeeding Down Syndrome Mothers Infant feeding breastmilk Trisomy 21 Figures Figure 1 Figure 2 Background Breastfeeding profoundly impacts infant wellbeing from birth, having immediate and lifelong benefits for the mother baby dyad. The World Health Organisation (WHO) advocates exclusive breastfeeding from birth to 6 months and continuation alongside solid food to 2 years [1]. In 2022–2023 the prevalence of breastfeeding in normal healthy babies in England 6–8 weeks after birth was 49.2% [2]. In a Cochrane systemic review, 4–8 interventions led to prolongation of breastfeeding, indicating that support is a crucial enabler [3]. Yet the rate of breastfeeding establishment and duration in babies with Down Syndrome (DS), for whom breastfeeding’s benefits are crucial, is lower than that of unaffected babies and lower than that defined by WHO [1, 4–6]. The complex, dynamic composition of breastmilk provides individualised infant nutrition, developmentally appropriate at each feed depending on the infant’s needs and developmental stage, via complex mother-infant neuroendocrine communications [7]. Immunomodulatory effects provide protection against pathogens; secretory IgA protects against respiratory, gastrointestinal, Group B Streptococcus infections and may protect against sudden infant death syndrome [7]. A high proportion of breastmilk is composed of maternally defined Human Milk Oligosaccharides (HMO) which facilitate beneficial gut bacterial growth as the infant’s immune system is developing [7, 8]. In 2016 and 2023 The Lancet issued a series of articles on breastfeeding, increasing the knowledge of benefits and highlighting undue promotion of formula milk advertising and provision of free samples of formula milk. This should be limited to avoid influencing mothers’ infant feeding decisions [6, 7, 9, 10]. Lifelong health outcomes for mother-baby dyads cannot be replicated in formula milk, although marketing aims to influence mothers that formula may promote improved intelligence [11]. However, greater intelligence, a decreased incidence of developing obesity and obesity-related conditions are long-term benefits for breastfed babies [7, 12]. Protection against the development of ovarian cancer, breast cancer, type 2 diabetes and heart disease are long term benefits for mothers [7, 9, 13]. Down Syndrome (DS) or Trisomy 21 is caused by the presence of an additional copy of chromosome 21 usually due to non-disjunction [14], and has a worldwide prevalence of 1 in 1000 to 1 in 1100 live births [15]. Infants born with DS have a wide range of phenotypical variations and comorbidities. Cardiovascular, respiratory conditions and hypotonia result in fatigue. Narrow nasal passages, orofacial anomalies and macroglossia result in suck-breath-swallow disorders along with gastroesophageal reflux disease which impact establishment and maintenance of breastfeeding, and thus sufficient nutrition for growth and development [16, 17]. Babies with DS are more often hospitalised than unaffected babies, initially in the Neonatal Unit (NNU) or subsequently due to poor weight gain or co-morbidities [18]. Lack of facilities and Health Care Professional (HCP) support may be a challenge to all breastfeeding mothers [19–23]. The importance of immunomodulatory, developmental, nutritional, mother-infant bonding and wider societal benefits cannot be underestimated in a baby with DS. Specialist HCP support appears lacking to establish or maintain breastfeeding [24, 25] and mothers may have prior perceptions from experience or social networks impacting motivation and perceived breastfeeding ability [26]. Increased understanding, awareness and knowledge base in HCPs may improve breastfeeding rates and duration in babies with DS. UNICEF’s Baby Friendly Initiative (BFI) provides accreditation for maternity, neonatal, health visiting and children’s centres fulfilling required standards for breastfeeding support including the ‘Responsive Feeding Approach’[27–29]. This approach promotes a close and loving mother-baby relationship, particularly important in supporting development in a baby with DS. There are limited studies conducted with mothers breastfeeding a baby with DS [16, 19, 21, 30–33]. Often data is collected retrospectively via medical records, interviews, and questionnaires years after breastfeeding cessation, and thus are vulnerable to recall bias. Furthermore, often information about parity is often excluded [18, 34]. However, recently, several studies have added to the body of knowledge [6, 25, 31–33], one of which includes HCP experiences rarely found in the literature in this context [25]. However, some are small studies in countries where cultural influences may not allow generalisation elsewhere [6, 31]. Positive prior experience of a multiparous mother correlates with breastfeeding prolongation [35] and is noted to be beneficial [25], and therefore may be advantageous irrespective of whether prior children were affected with DS. However, more recently, a study in Mexico found younger mothers were more successful at breastfeeding a baby with DS [6]. Consideration of confounding variables is limited, an issue noted in a previous systematic review regarding breastfeeding babies with complex medical conditions [36]. Furthermore, differing phenotypical severities and common comorbidities affecting babies’ breastfeeding ability are often precluded, i.e. exclusion of babies with dysphagia [37]. This study, although small, adds further crucial maternal experiences to the platform of knowledge, reinforcing the visibility and need for specific HCP training and support for mothers with babies with DS. Methods Aims Our overall research question was ‘What are the barriers and enablers experienced by mothers attempting to breastfeed a baby with DS? Aims included to highlight how enablers may be optimised and barriers overcome to increase the rate of breastfeeding in babies with DS to align with WHO recommendations [1], by: exploring and understanding in depth the experience of a small number of mothers breastfeeding or attempting to breastfeed a baby with DS. exploring the experienced barriers and enablers to supporting mothers’ breastfeeding or attempting to breastfeed a baby with DS. investigating how enablers could be optimised and challenges overcome to contribute to the knowledge base for supporting breastfeeding in babies with DS. Study Design and Setting A qualitative study method allows rich in-depth analysis of participants’ experiences; a case study design was chosen to maximise the level of in-depth data obtained. Semi-structured interviews allowed mothers to communicate their own individual journey unrestricted by structured questions, thus enabling in depth data collection of individual experiences. Whilst a single case study provides the opportunity to explore the insights and experiences of one mother in depth, a multiple case study design allowed further breadth and depth of exploration, and comparison between different mother’s experiences [38]. Up to three mothers were sought for participation; cases explored were Participant 001’, a young primiparous mother in a relatively new relationship who became pregnant unexpectedly. Participant 002, an HCP, and experienced mother of five having breastfed all her babies, and Participant 003, a strong advocate for breastfeeding having breastfed her two prior babies, who also had a wider family member with DS. Methods chosen were semi-structured interviews followed by reflexive thematic analysis with an inductive approach [39–41]. An inductive approach was appropriate to explore the participants’ experiences and insights. However, some preconceived ideas were gained from the literature review conducted; these were used to inform the interview topic guide and influenced analysis. [initials removed for review] is an experienced Clinical Trial Manager, originally trained in Nursing and Midwifery; her professional knowledge and experience were used throughout the project and interview process, and a reflexive journal was maintained. Due to the nature of the topic, it was crucial that interviews were conducted non-judgementally, from a supportive, empathetic stance. Participant Recruitment A submission was made to the Down Syndrome Association (DSA), a UK organisation providing support for individuals with DS, to obtain their assistance to recruit participants via advertising on their website and social media via a project flyer. Participant characteristics were defined according to the Eligibility Criteria depicted in Table 1 . Eight mothers responded to the DSA’s advertisement and the planned maximum of three participated. Interested participants not fulfilling the eligibility criteria or whose interest was received as recruitment closed received an email thanking them for their time and interest. Eligibility Criteria Eligibility criteria are depicted in Table 1 . Table 1 Eligibility Criteria Inclusion Criteria Exclusion Criteria 1. Mothers of babies with a confirmed diagnosis of Down Syndrome 1. Males 2. Mothers who breastfed or attempted to breastfeed 2. Mothers who did not attempt to breastfeed or did not wish to breastfeed 3. Mothers with a baby with Down Syndrome who is < 1 year of age when consent is provided 3. Non-English-speaking mothers as this was a small project with no access to translation services 4. Mothers who would not be able to participate in a semi-structure interview remotely via Zoom, MS Teams or similar 5. Mothers with babies with Down Syndrome who do not have a confirmed diagnosis of Down Syndrome 6. Mothers with babies who are > 1 year of age when consent is provided 7. Mothers with babies with Down Syndrome who have additional diagnoses unconnected with Down Syndrome which may impact feeding Mid-way through the second participant’s interview a deviation to the eligibility criteria was revealed, that the mother’s baby was not < 1 year old as expected but was 12 years old. The mother’s participation, experience and insight were invaluable in a population challenging to access, thus an amendment to the eligibility criteria was submitted and approved by Bristol University Health Science Student Research Ethics Committee (BUHSSREC). Data Collection Eligible potential participants were provided with a Participant Information Sheet to read at their leisure and an opportunity to ask questions prior to providing informed consent. A semi-structured interview was scheduled at the mother’s convenience via Microsoft Teams which was recorded and transcribed. Figure 1 . Represents the Semi-Structured Interview Guide utilised. Interviews were conducted online to facilitate access to women from anywhere in the UK. They were conducted between November 2023 and March 2024; participating mothers received a ‘Thank You’ email following the interview. Consent forms, recordings and transcripts were securely stored, to be deleted on project completion. Following each semi-structured interview, extraneous data and participant identifying information were removed from transcripts and replaced with participant numbers; Participant 001, Participant 002 and Participant 003 . Data Analysis Six phase Reflexive Thematic Analysis was used for analysis [39, 40]. Coding was undertaken using NVivo™, a computer assisted qualitative data analysis software programme, used with permission from Lumivero [42]. Analysis was performed on a semantic level, based upon participant’s own experiences and insights. Following initial familiarisation with the data set, 29 initial codes were identified which were reconsidered and refined through three further review cycles as the analysis evolved. Six code clusters and seven provisional themes were generated. These were revisited in an iterative approach before final themes were generated. Coding and theme generation were completed by [initials removed for review] but were reviewed and discussed by both authors. Results Mothers were keen to share their experiences and participated due to their passion for breastfeeding, altruism, catharsis, and social isolation having a baby with DS, such motivations to participate in interviews are noted elsewhere [43–45]. Table 2 . depicts participant characteristics. All three mothers had partners and gave birth in hospital. Participants 001 and 002 had breastfed their prior (unaffected) children for 12 months and 2.5 years each respectively. At the time of interview, Participant 001 had transitioned to feeding with formula milk, Participant 002 had successfully breastfed, and Participant 003was mixed feeding, endeavouring to reestablish breastfeeding. Table 2 Participant Characteristics Participant Number Birth Order Child's age at time of semi-structured interview Admitted to Neonatal Unit Diagnosis of Down Syndrome Interview Length 001 1 5 months Yes Postnatal 1 hour 13 minutes 002 4 (of 5) 12 years Yes Postnatal 57 minutes 003 3 4 months No Antenatal 59 minutes Figure 2 shows two overarching themes, and six subthemes generated following analysis. Each theme and subtheme symbolises mothers’ experiences and the key role of HCPs. Themes and subthemes reveal key practical and emotional barriers and enablers, explored in detail below supported with quotes. Theme 1: Professionals’ Attitude is Key This theme encompasses mothers’ experiences of HCPs, representing the substantial impact of HCPs’ attitudes as key enablers, but conversely, sometimes unwittingly becoming a barrier themselves. Three subthemes were identified which reflected mothers’ frequent experiences with HCPs. ‘It’s a Numbers Game’ Participants reported that HCPs often focused on quantification i.e. input, output and weight took precedence over supporting establishment of breastfeeding. This appeared to be based on the HCP’s perception that babies with DS usually have orofacial anomalies impacting the suck–swallow-breath reflex and gastro-oesophageal reflux impacting breastfeeding. Bottle feeding, with formula or expressed breastmilk was easier to quantify, especially initially in hospital: ‘They had like, this feeding chart to fill in to know how much he'd had […] it was just very regimented, and it made me and my partner a little bit regimented with his feeds like it was all we were talking about was like measurements and times.’ (Participant 001) ‘Whenever you see a doctor, there's always the question of, well, how much is she taking […]. So being able to put something in a bottle allows you to at least measure and to gauge against benchmarks […] with a bottle, you can just say X number. With breastfeeding you're not so sure, you're going in terms of time, but you're not 100% sure.’ (Participant 003) This precedence could elicit unwelcome responses. Whilst sufficient nourishment is key, the response below could be detrimental to motivation and self-esteem: ‘I was all proud. Like, yeah, we had really long breastfeeds. It was like he was on my breasts for about an hour […] then the doctor said, oh, well, if he's on for that long it's indicating he’s not getting as much. He should be getting more in a smaller amount of time. So then I thought, oh, I'd wish I'd not told him the truth . ’ (Participant 001 ) Perseverance was expressed as focusing on input and output to ensure weight gain. For some this meant bottle-feeding expressed breastmilk until breastfeeding was established: ‘It was a case of watching, paying a lot of attention to the to the numbers, you know, the amount in the bottle, the amount in the nappy and so it was kind of a bit of a numbers game.’ (Participant 002) Establishing breastfeeding was overshadowed by HCPs anticipating challenges: ‘An hour or two after she was born, the midwife came in with a little creamy bottle of formula, and she said OK, let's see if she's latching. So I put her to my breast. […] we tried and she did. She had a really strong suck, actually, but I think probably the midwife thought maybe we should just try and see if she would take a bottle. So she took 15 mls of formula and I was a bit kind of against it because I, you know, exclusively breastfed my other two [..] and then here comes the bottle and I didn't know why. In hindsight, I think maybe the midwife was testing to see if she [baby] had any struggles. And how strong and like sort of capable and healthy she was to ascertain whether she needed to get tube fed .’ (Participant 003) ‘… just seconds after birth, he wouldn't latch onto me and when he did, threw up straight away [..]. And then it was like a few hours later, he had a feeding tube’ (Participant 001) Luck of the draw HCP support and attitudes experienced differed, participants experienced highly supportive HCPs and conversely, detrimental comments from others. All 3 mothers appeared to be in a ‘luck of the draw’ scenario, dependent on their assigned HCP at any point. Whilst such variation may be experienced by any mother, the impact of negativity is exacerbated with a baby with DS, where HCP expertise and support are crucial: ‘… she went ‘ move ’ like that. And I was like that broke. I felt a bit inadequate around her. […] I felt really self-conscious every time I tried to breastfeed him. […] Whereas the next nurse I had another night, she was lovely […] And she had so much to do and yet she kept pausing to come and help me breastfeed. So she was wonderful .’ (Participant 001) Participant 002 experienced a lack of encouragement: ‘ She really put a gloomy spin on it […] there was an absence of any positives, success stories or completely devoid of any positivity. There was absolutely no balance to her advice. You know, […] don't give up some women they've been able and they have succeeded so there was no information like that. It was just the negative slant.’ (Participant 002) Conversely, Participant 003 experienced extremely positive support. ‘There were two ladies on the feeding support team that were actually really lovely and helpful. Admittedly, both of them had said that they didn't have any experience in babies with Down syndrome, […] I think they tried their absolute best and they were really helpful. I went back a few times and on subsequent visits. I do know that they had done some research in between to try and kind of tailor their advice’ (Participant 003). ‘If they had had more expert knowledge’ Accessing expert support was a significant barrier, both Participants 001 and 002 viewed themselves as experts having successfully breastfed their prior unaffected children and grew frustrated at the lack of specialist expertise. ‘…if she had had more confidence, […] more expert knowledge […]there was no where I could have gone for tips and tricks.[…] I grew frustrated and irritated at any sort of support because it was it was coming from a place of less expert and you know, this sounds arrogant, but they knew less than me and I found it irritating when I was getting advice and that really wasn't helpful.’ (Participant 002) ‘You would hope that there was some level of knowledge about the peculiarities of feeding a baby with Down syndrome. [..] I think her condition is so unique and specific that I wouldn't trust to go somewhere and expect advice to be good. Hopefully not, and it sounds like negative, but that's somewhat of my experience. ’ (Participant 003) ‘I do recall something she said to me, which I thought indicated she had gone and done some research because she hadn't said it the first few times. She told me she thought we should try a nipple shield because it would elongate the nipple. Their palates are a lot narrower and higher up, she thought maybe when [ baby] was sucking on my breast that the stimulus from the nipple hitting the palate just wasn't quite happening.’ (Participant 003 ) Participant 001, as a primiparous mother, needed support in basic foundations, in addition to specialist support: ‘…the foundations of breastfeeding actually make a really massive difference.’ (Participant 001) Theme 2; A new mother dealing with a huge emotional upheaval This theme epitomises the immense emotional impact and adjustment experienced. Three subthemes were identified which illustrate potentially prolonged and significant emotional impact, the importance of coping strategies and self-belief. Coping with emotions experienced All three mothers spoke about the emotional impact of their breastfeeding journey. Both Participants 001 and 002 had received the diagnosis of DS postnatally, with no time to adjust or research DS: ‘Breastfeeding is a very hormonal, centred thing and hormones depend on sort of your mental health as well, don't they? [….] I was just losing it with all the anxiety it was really hard because I was trying to breastfeed. I think from the very beginning it was all a bit of a car crash.’ (Participant 001) ‘I actually think that I became clinically depressed […]. When I look back at the amount of crying that I did, I think that for sure I had depression now, probably post-natal depression. And had I known in pregnancy that she had Down Syndrome, I would have had time to adjust. I would have had time to become more expert.’ (Participant 002) ‘…but it's me. I have the problem with myself. This is why I say like I'm just beating myself up for things that I really shouldn’t be’ (Participant 002) Participant 001’s baby was transferred to another NNU, her situation exacerbated by DS, her experience may be similar to any mother with a baby in NNU: ‘ I was like, really freaking out but at the time I'd lost my mind a little bit […] I was starting to just feel like we were in prison like I thought we are never going home. ‘ (Participant 001) ‘ It’s a marathon’ This subtheme illustrates the substantial additional physical and emotional effort required compared with an unaffected baby to overcome barriers frequently associated with DS such as sucking, latching, hypotonia and fatigue. Participants 002 and 003 could directly compare their experience to breastfeeding their prior, unaffected babies, whereas Participant 001 felt she needed to be two people: ‘My experience was that it was a 24/7 process, so physical exhausting because it was such a marathon.’ (Participant 002) ‘I did struggle with it mainly because she was very sleepy […] I couldn't get her to latch for more than, say, 5 or 6 seconds of sucking, and then she would fall off so she could latch on, but she would just pop off like every few seconds […]basically that became the rest of our journey, like breastfeeding, pumping, formula.’ (Participant 003) ‘I felt like I needed to leave my boobs in the incubator and then the rest if me in the maternity ward. […] I really need there to be two of me […] how do I divide myself? ’ (Participant 001) Provision of substantial professional and family support was a crucial enabler: ‘I had a very cooperative, highly invested participating partner in my husband who was available, indeed took time off work to mind the other kids and free me up to do this literally 24 hours. […] Initially it was a real heavy investment of time, I had the perfect idyllic situation. What husband's boss says take all the time you need?’ (Participant 002) Having self-belief Participants 002 and 003 benefitted from prior successful breastfeeding experiences, empowering them with self-belief, knowledge, and perseverance: ‘ There was no encouragement, and I was lucky on that. I didn't really need that encouragement because my mother was a midwife and we grew up, me and my sisters, believing that, you know, breast is best.’ (Participant 002) However, DS related anomalies such as sucking ability and fatigue thwarted breastfeeding: ‘If I could do it again, I would probably be a lot more trusting of her ability to get enough nutrition from me directly but back then, I think I was so worried and eager to just get anything into her, As much as I possibly could.[…] I would probably want to have more faith that she was going to be getting enough from me, just like my boys did and trust that. But then again, maybe she wouldn't have because she was just so sleepy.’ (Participant 003) Self-belief appears to be fundamental. Participant 001 experienced unhelpful comments when HCP support was crucial: ‘She kept telling me I was doing things wrong.’ (Participant 001) Discussion The barriers and enablers to supporting breastfeeding for babies with DS in this study are consistent with the wider literature, highlighting an ongoing gap in HCP support and expertise, and revealing the impact on breastfeeding of mother’s journeys. Some barriers and enablers may be generalisable to mother-baby dyads unaffected by DS or admitted to NNU, however, the perception of barriers to mothers and HCPs appear exacerbated by DS. Mothers’ psychological health appeared inadequately supported and recognition of the highly significant role emotions have in breastfeeding substantially underestimated. Mothers may feel frightened and anxious following a postnatal DS diagnosis [46]; indeed, the substantial impact of emotional distress on breastfeeding a baby with DS has been documented [19, 24, 30, 33, 36, 47–49]. Maternal psychological distress has profound physical effects on breastfeeding i.e. cortisol release passes to the baby via breastmilk; maternal cortisol may influence breastmilk composition altering both the macronutrient and immunomodulatory composition [50–52]. Stress induced inhibition of oxytocin impacts milk production and ejection [53, 54], potentially resulting in an insufficient milk supply. Consequently, the emotional adjustment to a DS diagnosis may impact breastfeeding establishment and duration. This is an important barrier which could be addressed by improved professional support, and one also recognised in other recent studies [25, 31, 33] . HCPs’ assumptions about babies with DS appeared to override WHO recommendations that breastfeeding should be initiated within an hour of birth [1]; Participant 003 experienced that the midwife assessed her baby’s suck using a bottle of formula despite her experience and desire to breastfeed. Medicalisation appeared to take precedence, focusing on quantification, the emphasis being on DS as a medical condition, an issue also noted elsewhere in literature [4, 55]. Poor suck is also a recognised barrier [20] and was a reason for breastfeeding cessation in 21% of mothers in a large Italian study [19]. However, recently, poor suck or milk insufficiency is noted as the most experienced barrier in breastfeeding a baby with DS [56]. In this study, only Participant 003 received advice about using a nipple shield to overcome sucking issues after HCPs had researched breastfeeding babies with DS. In general, specific guidance including techniques and positions to optimise breastfeeding a baby with DS appeared lacking. Positive About Down Syndrome (PADs) Maternity Experience Survey in 2022 found that 40% of mothers experienced assumptions by HCPs that DS meant they might not be able to breastfeed, and 66% of mothers’ breastfeeding experience was upsetting or disappointing [57]. The UK National Institute for Health and Care Excellence note that breastfeeding support should be individually tailored referring to specialists as needed [58], and the Care Quality Commission found decreased HCP availability to all mothers over the last 5 years [59]. However, increased individualised professional support and intervention has been recommended for mothers breastfeeding babies with DS [5, 31, 33, 60]. Thus, routine provision of substantial emotional support is a key enabler. UNICEF’s UK BFI guidelines have been adapted for babies in NNU, outlining guidance and steps to support breastfeeding babies in NNU [61, 62]. These guidelines state that breastfeeding should only be deprioritised in the case of medical instability (defined as apnoea, desaturations, or bradycardia) [61, 62]. Babies with DS are more likely to require tube feeding, which exacerbates their ability to establish breastfeeding [33], whilst UNICEF UK BFI guidelines apply to any baby, rather than specifically a baby with DS, in this study participants’ 001 and 002 babies’ spent time in NNU but did not appear to experience enactment of this guidance. Positive breastfeeding experience is an enabler [22]; this study evidenced that experience provided an advantage but no guarantee of success. Participant 003 was mixed feeding and persevering to reestablish breastfeeding, whilst Participant 002 was able to establish breastfeeding over time. Perseverance is a known enabler; coupled with patience and HCP support, successful breastfeeding can be achieved [25, 30, 33, 56, 63, 64]. The results of this study concur with these findings. Although recent studies have added to the body of knowledge [6, 31–33], there remains much scope for future studies to add to the knowledge base, providing a platform for increasing HCPs expertise about breastfeeding in babies with DS to aim to increase number of babies with DS who are successfully breastfed for longer. A larger study including mothers from a broad range of backgrounds and experiences, and studies investigating HCP training needs could facilitate increased breastfeeding in babies with DS. Strengths and Limitations Strengths include an in-depth exploration of 3 mothers’ breastfeeding journeys, highlighting barriers and enablers experienced from maternal viewpoints. Recall bias is a consideration as Participant 002’s child was 12, although recall bias of breastfeeding mothers has been found to be accurate after 6 and 20 years respectively [65, 66]. Furthermore, Participant 002’s memories were vivid and, as an HCP, had considerable insight into her experience. This small study was limited in scope, with time constraints and no funding. Medical records were not reviewed which could have provided an added dimension. Selection bias was minimised by enrolling eligible mothers chronologically at initial contact. A case study approach is not intended to be representative of the broader population; mothers’ joining the study were motivated to participate in a study and three mothers only were included. Whilst the sample size was small, semi-structured interview lengths were between 57 minutes and 1 hour 13 minutes long, allowing a comprehensive and in-depth exploration of mother’s experiences, and a variety of contrasting experiences were revealed by participants, whose were geographically dispersed throughout the UK, rather than located in one Health Authority location. Whereas other studies may include a higher number of participants, semi-structured interview lengths noted were sometime much shorter, perhaps restricting the depth of information obtained, for example 15–20 minutes [25]. Although immunomodulatory, development, nutritional, relational and societal benefits of breastfeeding are critical in this population, research regarding mothers’ experiences is limited. This study, though small adds to the existing knowledge base and reinforces the need for widespread specific treatment pathways and increased HCP training and awareness to increase implementation of the UNICEF BFI in this population and enable babies with DS to be breastfed successfully for longer. Conclusion Barriers and enablers to breastfeeding a baby with DS and support experienced have been explored in depth through interviews with three mothers. For these mothers, practical and emotional HCP support was variable despite the availability of specialist information in literature and via the DSA, PADs or other organisations with specific support groups. In these mother’s experiences, however, HCPs often lacked specialist knowledge. As DS is the most common genetic condition both in the UK [67] and worldwide [68], the availability of individualised specialist breastfeeding expertise needs to become more accessible, perhaps with additional peer support from an experienced breastfeeding mother with a baby with DS. Whereas a specific care pathway is noted in some Health Authorities [33] increased support via widely available specific care pathways implemented on diagnosis, and further effective implementation of the BFI to fulfil this unmet need would optimise enablers to increase success rates and overcome barriers. Abbreviations BFI Baby Friendly Initiative BUHSSREC Bristol University Health Science Student Research Ethics Committee CQC Care Quality Commission DS Down Syndrome DSA Down Syndrome Association HCP Health Care Professional HMO Human Milk Oligosaccharides ICH GCP International Conference on Harmonization Good Clinical Practice MDT Multidisciplinary Team NHS National Health Service NNU Neonatal Unit PADS Positive About Down Syndrome PIS Participant Information Sheet Declarations Ethics Approval and Consent to Participate This study was conducted in accordance with the Declaration of Helsinki and International Conference on Harmonisation Good Clinical Practice (ICH GCP). Ethical Approval was obtained from Bristol University Health Science Student Research Ethics Committee (BUHSSREC); reference 15831. Clinical Trial Number Not Applicable Consent for Publication Mothers provided voluntary written informed consent prior to participation in the study. The Participant Information Sheet and Consent Form also included information that short, anonymised quotes from their interview may be used in any publication resulting from this study but that identities were pseudo anonymised with a participant number (Participant 001, 002, and 003). Availability of Data and Materials The datasets generated and analysed during the current study are not publicly available due to protection of participants identity and for confidentiality reasons. Pseudo anonymised interview transcripts are available from the corresponding author on reasonable request. Competing Interests The authors declare that they have no competing interests Funding This study received no funding Authors’ Contributions JD submitted and obtained ethics approval, wrote first draft of all project documentation , conducted the research including semi structured interviews, data analysis and write up. SD conceived the original project idea, reviewed all study documents, and provided full supervision throughout the project including discussion of analysis and results. Both authors discussed and revised the project plan together, and both read and approved the final manuscript. Acknowledgements Acknowledgements go to the Down Syndrome Association (DSA) for their support in reaching out to potential participants for inclusion in this study, and most importantly to the participating mothers for their time, experiences and insights in participating in semi structured interviews. References WHO. Infant and young child feeding 2021 [updated 09 June 2021. Available from: https://www.who.int/news-room/fact-sheets/detail/infant-and-young-child-feeding. OHID. Fingertips Public Health Data: Office for Health Improvement and Disparities; 2024 [Available from: https://fingertips.phe.org.uk/search/bre astfeeding#page/4/gid/1/pat/159/par/K020 00001/ati/15/are/E92000001/iid/92517/ag e/170/sex/4/cat/-1/ctp/-1/yrr/1/cid/4/tbm/1. Gavine A, Shinwell SC, Buchanan P, Farre A, Wade A, Lynn F, et al. Support for healthy breastfeeding mothers with healthy term babies. Cochrane Database Systemic Review . 2022;10(10):CD001141. Sooben RD. Breastfeeding patterns in infants with Down's syndrome: A literature review. Br. J. Midwifery . 2012;20(3):187-92. Magenis ML, de Faveri W, Castro K, Forte GC, Grande AJ, Perry IS. Down syndrome and breastfeeding: A systematic review. J. Intellect. Disabil. 2022;26(1):244-63. Rodríguez AO, de la Puente SG, Arizmendi KAF, Robledo TTV. Breastfeeding in children with down syndrome. BMC Pediatr . 2025;25(1):437. Victora CG, Bahl R, Barros AJ, França GV, Horton S, Krasevec J, et al. Breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. Lancet . 2016;387(10017):475-90. Andreas NJ, Kampmann B, Mehring Le-Doare K. Human breast milk: A review on its composition and bioactivity. Early Hum. Dev. 2015;91(11):629-35. Pérez-Escamilla R, Tomori C, Hernández-Cordero S, Baker P, Barros AJD, Bégin F, et al. Breastfeeding: crucially important, but increasingly challenged in a market-driven world. Lancet . 2023;401(10375):472-85. Baker P, Smith JP, Garde A, Grummer-Strawn LM, Wood B, Sen G, et al. The political economy of infant and young child feeding: confronting corporate power, overcoming structural barriers, and accelerating progress. Lancet . 2023;401(10375):503-24. Rollins N, Piwoz E, Baker P, Kingston G, Mabaso KM, McCoy D, et al. Marketing of commercial milk formula: a system to capture parents, communities, science, and policy. Lancet . 2023;401(10375):486-502. Purdy IB, Melwak MA. Breast milk: A psychoneuroimmunologic perspective for mother-infant dyads. Newborn Infant Nurs. Rev. 2013;13(4):178-83. Louis-Jacques AF, Stuebe AM. Enabling Breastfeeding to Support Lifelong Health for Mother and Child. Obstet. Gynecol. Clin. North. Am. 2020;47(3):363-81. Bull MJ. Down Syndrome. N. Engl. J. Med. 2020;382(24):2344-52. United Nations. United Nations; World Down Syndrome Day 21 March 2025 [Available from: https://www.un.org/en/observances/down-syndrome-day#:~:text=The%20estimated%20incidence%20of%20Down,born%20with%20this%20chromosome%20disorder. Madasu S, Avinash S, Guduru L, Shastry PK. The Phenotypical, clinical and cytological profile of Down Syndrome children: A hospital based study in Telangana. Int. J. Acad. Med. Pharm. 2022;4(5):177-82. Glivetic T, Rodin U, Milosevic M, Mayer D, Filipovic-Grcic B, Seferovic Saric M. Prevalence, prenatal screening and neonatal features in children with Down syndrome: a registry-based national study. Ital. J. Pediatr . 2015;41:1-7. Rogers SL, Smith B, Mengoni SE. Relationships between feeding problems, eating behaviours and parental feeding practices in children with Down syndrome: A cross-sectional study. J. Appl. Res. Intellect. Disabil. 2022;35(2):596-606. Pisacane A, Toscano E, Pirri I, Continisio P, Andria G, Zoli B, et al. Down syndrome and breastfeeding. Acta Paediatr. 2003;92(12):1479-81. Colón E, Dávila-Torres RR, Parrilla-Rodríguez AM, Toledo A, Gorrín-Peralta JJ, Reyes-Ortiz VE. Exploratory study: barriers for initiation and/or discontinuation of breastfeeding in mothers of children with Down syndrome. P. R. Health Sci. J . 2009;28(4):340-4. Hansen T. Feeding infants with Down syndrome. Brandeis University: Brandeis University, Graduate School of Arts and Sciences; 2011. Génova L, Cerda J, Correa C, Vergara N, Lizama C M. Good health indicators in children with Down syndrome: High frequency of exclusive breastfeeding at 6 months. Rev. chil. Pediatr . 2018;89(1):32-41. Aguilar-Cordero MJ, Rodríguez-Blanque R, Sánchez-López A, León-Ríos XA, Expósito-Ruiz M, Mur-Villar N. Assessment of the technique of breastfeeding in babies with down syndrome. Aquichan . 2019;19(4):1-12. Cartwright A, Boath E. Feeding infants with Down's Syndrome: A qualitative study of mothers' experiences. J. Neonatal Nurs. 2018;24(3):134-41. Mengoni SE, Smith B, Wythe H, Rogers SL. Experiences of feeding young children with Down syndrome: parents' and health professionals' perspectives. Int J Dev Disabil . 2025;71(4):545-53. Srivastava K, Norman A, Ferrario H, Mason E, Mortimer S. A qualitative exploration of the media's influence on UK women's views of breastfeeding. Br. J. Midwifery . 2021;30(1):10-8. UNICEF. Responsive Feeding: Supporting Close and Loving Relationships 2016 [Available from: https://www.unicef.org.uk/babyfriendly/wp-content/uploads/sites/2/2017/12/Responsive-Feeding-Infosheet-Unicef-UK-Baby-Friendly-Initiative.pdf. UNICEF. The Baby Friendly Initiative - Accreditation 2024 [Available from: https://www.unicef.org.uk/babyfriendly/accreditation/. UNICEF. Guide to the Unicef UK Baby Friendly Initiative Standards 2024 [3rd:[Available from: https://www.unicef.org.uk/babyfriendly/baby-friendly-resources/implementing-standards-resources/guide-to-the-standards/. Barros da Silva R, Barbieri-Figueiredo MDC, Van Riper M. Breastfeeding Experiences of Mothers of Children with Down Syndrome. Compr. Child Adolesc. Nurs. 2019;42(4):250-64. Özsavran M, Ayyıldız TK. Breastfeeding Experiences of Mothers of Children with Down Syndrome: A Qualitative Study. Breastfeed Med . 2025;20(1):50-8. Campos LM, Fernandes AER, Motta AR, Furlan RMMM. Factors associated with breastfeeding in infants with trisomy 21. Codas . 2025;37(6):e20240267. Hielscher LK. Feeding Problems and Weight in Infants and Children with Down Syndrome. (Doctoral dissertation, University of Hertfordshire) . 2025. Hopman E, Csizmadia CG, Bastiani WF, Engels QM, de Graaf EA, le Cessie S, et al. Eating habits of young children with Down syndrome in The Netherlands: adequate nutrient intakes but delayed introduction of solid food. J. Am. Diet. Assoc. 1998;98(7):790-4. Cohen SS, Alexander DD, Krebs NF, Young BE, Cabana MD, Erdmann P, et al. Factors Associated with Breastfeeding Initiation and Continuation: A Meta-Analysis. J. Pediatr . 2018;203:190-6.e21. Hookway L, Lewis J, Brown A. The challenges of medically complex breastfed children and their families: A systematic review. Matern. Child Nutr. 2021;17(4):e13182. Agostini CO, Poloni S, Barbiero SM, Vian I. Prevalence of breastfeeding in children with congenital heart diseases and down syndrome. Clin. Nutr. ESPEN. 2021;44:458-62. Heale R, Twycross A. What is a case study? Evid. Based Nurs. 2018;21(1):7-8. Braun V, Clarke V. Doing Reflexive TA: The University of Auckland, New Zealand; 2023 [Available from: https://www.thematicanalysis.net/doing-reflexive-ta/. Braun V, Clarke V. Thematic Analysis A Practical Guide. Los Angeles, London, New Delhi, Singapore, Washington DC, Melbourne: SAGE Publications Ltd; 2022. Braun V, Clarke V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006;3(2):77-101. NVivo Qualitative Data Analysis Software (Version 14) released 2023: Lumivero; [Available from: https://lumivero.com/products/nvivo/. Oakley A. Chapter Four: Interviewing women: a contradiction in terms? The Ann Oakley reader. Bristol, UK: Policy Press; 2005. p. 217-32. Oakley A. Interviewing women again: Power, time and the gift. Sociology . 2016;50(1):195-213. Caulley DN. The Ann Oakley Reader: Gender, Women and Social Science. Qual. Res. J. 2006;6:164. Skotko B. Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics . 2005;115(1):64-77. Lewis E, Kritzinger A. Parental experiences of feeding problems in their infants with Down syndrome. Downs Syndr. Res. Pract. 2004;9(2):45-52. Al-Sarheed M. Feeding habits of children with Down's syndrome living in Riyadh, Saudi Arabia. J. Trop. Pediatr. 2006;52(2):83-6. Hielscher L, Ludlow A, Mengoni SE, Rogers S, Irvine K. The experiences of new mothers accessing feeding support for infants with down syndrome during the COVID-19 pandemic. Int. J. Dev. Disabil. 2024;70(3):469-78. Nagel EM, Howland MA, Pando C, Stang J, Mason SM, Fields DA, et al. Maternal Psychological Distress and Lactation and Breastfeeding Outcomes: a Narrative Review. Clin Ther . 2022;44(2):215-27. Ziomkiewicz A, Babiszewska M, Apanasewicz A, Piosek M, Wychowaniec P, Cierniak A, et al. Psychosocial stress and cortisol stress reactivity predict breast milk composition. Sci. Rep. 2021;11(1):11576. Thibeau S, D'Apolito K, Minnick AF, Dietrich MS, Kane B, Cooley S, et al. Relationships of Maternal Stress with Milk Immune Components in African American Mothers of Healthy Term Infants. Breastfeed Med . 2016;11(1):6-14. Hoff CE, Movva N, Rosen Vollmar AK, Pérez-Escamilla R. Impact of Maternal Anxiety on Breastfeeding Outcomes: A Systematic Review. Adv. Nutr. 2019;10(5):816-26. Ueda T, Yokoyama Y, Irahara M, Aono T. Influence of psychological stress on suckling-induced pulsatile oxytocin release. Obstet. Gynecol. 1994;84(2):259-62. Davies C. Down's Syndrome: A Breast-Feeding Challenge. Br. J. Midwifery . 2000;8(7):432-7. Zhen L, Moxon J, Gorton S, Hook D. Can I breastfeed my baby with Down syndrome? A scoping review. J. Paediatr. Child Health . 2021;57(12):1866-80. PADS. Positive About Down Syndrome; Breastfeeding a baby with Down Syndrome: The maternity experience 2022 UK: Positive about Down Syndrome; [updated August 2022. Available from: https://positiveaboutdownsyndrome.co.uk/wp-content/uploads/2022/10/12112-PADS-Breastfeeding-Report_Oct2022.pdf?189db0&189db0. NICE. Postnatal Care: National Institute for Health and Care Excellence (NICE); 2021 [Available from: https://www.nice.org.uk/guidance/NG194/chapter/recommendations#planning-and-supporting-babies-feeding. CQC. 2023 Maternity Survey Statistical Release; Independent Analysis for England: Care Quality Commission; 2024 [72]. Available from: https://www.cqc.org.uk/publications/surveys/maternity-survey. Williams GM, Leary S, Leadbetter S, Toms S, Mortimer G, Scorrer T, et al. Establishing breast feeding in infants with Down syndrome: the FADES cohort experience. BMJ Paedtriatr. Open . 2022;6(1):1-8. Maastrup R, Hannula L, Hansen MN, Ezeonodo A, Haiek LN. The Baby-friendly Hospital Initiative for neonatal wards. A mini review. Acta Paediatr. 2022;111(4):750-5. WHO, UNICEF. Protecting, promoting and supporting breastfeeding: the Baby-friendly Hospital Initiative for small, sick and preterm newborns. Geneva: World Health Organization; 2020. Aumonier ME, Cunningham CC. Breast feeding in infants with Down's syndrome. Child Care Health Dev. 1983;9(5):247-55. Ergaz-Shaltiel Z, Engel O, Erlichman I, Naveh Y, Schimmel MS, Tenenbaum A. Neonatal characteristics and perinatal complications in neonates with Down syndrome. Am. J. Med. Genet. 2017;173(5):1279-86. Li R, Ingol TT, Smith K, Oza-Frank R, Keim SA. Reliability of Maternal Recall of Feeding at the Breast and Breast Milk Expression 6 Years After Delivery. Breastfeed. Med. 2020;15(4):224-36. Natland ST, Andersen LF, Nilsen TIL, Forsmo S, Jacobsen GW. Maternal recall of breastfeeding duration twenty years after delivery. BMC Medical Research Methodology . 2012;12(1):179. Hyland A, Kennedy J. Down Syndrome (Trisomy 21) 2023 [Available from: https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/down-syndrome-trisomy-21/#:~:text=Prenatal%20management,chromosome%20condition%20in%20the%20UK. Weijerman ME, de Winter JP. Clinical practice. The care of children with Down syndrome. Eur J Pediatr . 2010;169(12):1445-52. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 24 Apr, 2026 Reviewers agreed at journal 06 Apr, 2026 Reviewers agreed at journal 05 Apr, 2026 Reviewers invited by journal 05 Apr, 2026 Editor assigned by journal 27 Mar, 2026 Submission checks completed at journal 27 Mar, 2026 First submitted to journal 24 Mar, 2026 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. 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The World Health Organisation (WHO) advocates exclusive breastfeeding from birth to 6 months and continuation alongside solid food to 2 years [1]. In 2022\u0026ndash;2023 the prevalence of breastfeeding in normal healthy babies in England 6\u0026ndash;8 weeks after birth was 49.2% [2]. In a Cochrane systemic review, 4\u0026ndash;8 interventions led to prolongation of breastfeeding, indicating that support is a crucial enabler [3]. Yet the rate of breastfeeding establishment and duration in babies with Down Syndrome (DS), for whom breastfeeding\u0026rsquo;s benefits are crucial, is lower than that of unaffected babies and lower than that defined by WHO [1, 4\u0026ndash;6].\u003c/p\u003e \u003cp\u003eThe complex, dynamic composition of breastmilk provides individualised infant nutrition, developmentally appropriate at each feed depending on the infant\u0026rsquo;s needs and developmental stage, via complex mother-infant neuroendocrine communications [7]. Immunomodulatory effects provide protection against pathogens; secretory IgA protects against respiratory, gastrointestinal, Group B Streptococcus infections and may protect against sudden infant death syndrome [7]. A high proportion of breastmilk is composed of maternally defined Human Milk Oligosaccharides (HMO) which facilitate beneficial gut bacterial growth as the infant\u0026rsquo;s immune system is developing [7, 8].\u003c/p\u003e \u003cp\u003eIn 2016 and 2023 The Lancet issued a series of articles on breastfeeding, increasing the knowledge of benefits and highlighting undue promotion of formula milk advertising and provision of free samples of formula milk. This should be limited to avoid influencing mothers\u0026rsquo; infant feeding decisions [6, 7, 9, 10]. Lifelong health outcomes for mother-baby dyads cannot be replicated in formula milk, although marketing aims to influence mothers that formula may promote improved intelligence [11]. However, greater intelligence, a decreased incidence of developing obesity and obesity-related conditions are long-term benefits for breastfed babies [7, 12]. Protection against the development of ovarian cancer, breast cancer, type 2 diabetes and heart disease are long term benefits for mothers [7, 9, 13].\u003c/p\u003e \u003cp\u003eDown Syndrome (DS) or Trisomy 21 is caused by the presence of an additional copy of chromosome 21 usually due to non-disjunction [14], and has a worldwide prevalence of 1 in 1000 to 1 in 1100 live births [15]. Infants born with DS have a wide range of phenotypical variations and comorbidities. Cardiovascular, respiratory conditions and hypotonia result in fatigue. Narrow nasal passages, orofacial anomalies and macroglossia result in suck-breath-swallow disorders along with gastroesophageal reflux disease which impact establishment and maintenance of breastfeeding, and thus sufficient nutrition for growth and development [16, 17]. Babies with DS are more often hospitalised than unaffected babies, initially in the Neonatal Unit (NNU) or subsequently due to poor weight gain or co-morbidities [18]. Lack of facilities and Health Care Professional (HCP) support may be a challenge to all breastfeeding mothers [19\u0026ndash;23].\u003c/p\u003e \u003cp\u003eThe importance of immunomodulatory, developmental, nutritional, mother-infant bonding and wider societal benefits cannot be underestimated in a baby with DS. Specialist HCP support appears lacking to establish or maintain breastfeeding [24, 25] and mothers may have prior perceptions from experience or social networks impacting motivation and perceived breastfeeding ability [26]. Increased understanding, awareness and knowledge base in HCPs may improve breastfeeding rates and duration in babies with DS.\u003c/p\u003e \u003cp\u003eUNICEF\u0026rsquo;s Baby Friendly Initiative (BFI) provides accreditation for maternity, neonatal, health visiting and children\u0026rsquo;s centres fulfilling required standards for breastfeeding support including the \u0026lsquo;Responsive Feeding Approach\u0026rsquo;[27\u0026ndash;29]. This approach promotes a close and loving mother-baby relationship, particularly important in supporting development in a baby with DS.\u003c/p\u003e \u003cp\u003eThere are limited studies conducted with mothers breastfeeding a baby with DS [16, 19, 21, 30\u0026ndash;33]. Often data is collected retrospectively via medical records, interviews, and questionnaires years after breastfeeding cessation, and thus are vulnerable to recall bias. Furthermore, often information about parity is often excluded [18, 34]. However, recently, several studies have added to the body of knowledge [6, 25, 31\u0026ndash;33], one of which includes HCP experiences rarely found in the literature in this context [25]. However, some are small studies in countries where cultural influences may not allow generalisation elsewhere [6, 31]. Positive prior experience of a multiparous mother correlates with breastfeeding prolongation [35] and is noted to be beneficial [25], and therefore may be advantageous irrespective of whether prior children were affected with DS. However, more recently, a study in Mexico found younger mothers were more successful at breastfeeding a baby with DS [6].\u003c/p\u003e \u003cp\u003eConsideration of confounding variables is limited, an issue noted in a previous systematic review regarding breastfeeding babies with complex medical conditions [36]. Furthermore, differing phenotypical severities and common comorbidities affecting babies\u0026rsquo; breastfeeding ability are often precluded, i.e. exclusion of babies with dysphagia [37]. This study, although small, adds further crucial maternal experiences to the platform of knowledge, reinforcing the visibility and need for specific HCP training and support for mothers with babies with DS.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e\u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003eAims\u003c/span\u003e\u003c/h2\u003e \u003cp\u003e \u003cdiv class=\"BlockQuote\"\u003e \u003cp\u003eOur overall research question was \u0026lsquo;What are the barriers and enablers experienced by mothers attempting to breastfeed a baby with DS? Aims included\u003c/p\u003e \u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eto highlight how enablers may be optimised and barriers overcome to increase the rate of breastfeeding in babies with DS to align with WHO recommendations [1], by:\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eexploring and understanding in depth the experience of a small number of mothers\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003ebreastfeeding or attempting to breastfeed a baby with DS.\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eexploring the experienced barriers and enablers to supporting mothers\u0026rsquo; breastfeeding\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eor attempting to breastfeed a baby with DS.\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003einvestigating how enablers could be optimised and challenges overcome to contribute to the knowledge base for supporting breastfeeding in babies with DS.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eStudy Design and Setting\u003c/h3\u003e\n\u003cp\u003eA qualitative study method allows rich in-depth analysis of participants\u0026rsquo; experiences; a case study design was chosen to maximise the level of in-depth data obtained. Semi-structured interviews allowed mothers to communicate their own individual journey unrestricted by structured questions, thus enabling in depth data collection of individual experiences. Whilst a single case study provides the opportunity to explore the insights and experiences of one mother in depth, a multiple case study design allowed further breadth and depth of exploration, and comparison between different mother\u0026rsquo;s experiences [38]. Up to three mothers were sought for participation; cases explored were Participant 001\u0026rsquo;, a young primiparous mother in a relatively new relationship who became pregnant unexpectedly. Participant 002, an HCP, and experienced mother of five having breastfed all her babies, and Participant 003, a strong advocate for breastfeeding having breastfed her two prior babies, who also had a wider family member with DS.\u003c/p\u003e \u003cp\u003eMethods chosen were semi-structured interviews followed by reflexive thematic analysis with an inductive approach [39\u0026ndash;41]. An inductive approach was appropriate to explore the participants\u0026rsquo; experiences and insights. However, some preconceived ideas were gained from the literature review conducted; these were used to inform the interview topic guide and influenced analysis.\u003c/p\u003e \u003cp\u003e[initials removed for review] is an experienced Clinical Trial Manager, originally trained in Nursing and Midwifery; her professional knowledge and experience were used throughout the project and interview process, and a reflexive journal was maintained. Due to the nature of the topic, it was crucial that interviews were conducted non-judgementally, from a supportive, empathetic stance.\u003c/p\u003e\n\u003ch3\u003eParticipant Recruitment\u003c/h3\u003e\n\u003cp\u003eA submission was made to the Down Syndrome Association (DSA), a UK organisation providing support for individuals with DS, to obtain their assistance to recruit participants via advertising on their website and social media via a project flyer. Participant characteristics were defined according to the Eligibility Criteria depicted in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Eight mothers responded to the DSA\u0026rsquo;s advertisement and the planned maximum of three participated. Interested participants not fulfilling the eligibility criteria or whose interest was received as recruitment closed received an email thanking them for their time and interest.\u003c/p\u003e\n\u003ch3\u003eEligibility Criteria\u003c/h3\u003e\n\u003cp\u003eEligibility criteria are depicted in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eEligibility Criteria\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInclusion Criteria\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExclusion Criteria\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1. Mothers of babies with a confirmed \u003c/p\u003e \u003cp\u003e diagnosis of Down Syndrome\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1. Males\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2. Mothers who breastfed or attempted to \u003c/p\u003e \u003cp\u003e breastfeed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2. Mothers who did not attempt to\u003c/p\u003e \u003cp\u003ebreastfeed or did not wish to breastfeed\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3. Mothers with a baby with Down\u003c/p\u003e \u003cp\u003eSyndrome who is \u0026lt;\u0026thinsp;1 year of age when\u003c/p\u003e \u003cp\u003econsent is provided\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3. Non-English-speaking mothers as this\u003c/p\u003e \u003cp\u003ewas a small project with no access to\u003c/p\u003e \u003cp\u003etranslation services\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4. Mothers who would not be able to \u003c/p\u003e \u003cp\u003e participate in a semi-structure interview \u003c/p\u003e \u003cp\u003e remotely via Zoom, MS Teams or\u003c/p\u003e \u003cp\u003esimilar\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5. Mothers with babies with Down\u003c/p\u003e \u003cp\u003eSyndrome who do not have a confirmed\u003c/p\u003e \u003cp\u003ediagnosis of Down Syndrome\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6. Mothers with babies who are \u0026gt;\u0026thinsp;1 year of\u003c/p\u003e \u003cp\u003eage when consent is provided\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7. Mothers with babies with Down\u003c/p\u003e \u003cp\u003eSyndrome who have additional\u003c/p\u003e \u003cp\u003ediagnoses unconnected with Down\u003c/p\u003e \u003cp\u003eSyndrome which may impact feeding\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eMid-way through the second participant\u0026rsquo;s interview a deviation to the eligibility criteria was revealed, that the mother\u0026rsquo;s baby was not \u0026lt;\u0026thinsp;1 year old as expected but was 12 years old. The mother\u0026rsquo;s participation, experience and insight were invaluable in a population challenging to access, thus an amendment to the eligibility criteria was submitted and approved by Bristol University Health Science Student Research Ethics Committee (BUHSSREC).\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003e Eligible potential participants were provided with a Participant Information Sheet to read at their leisure and an opportunity to ask questions prior to providing informed consent. A semi-structured interview was scheduled at the mother\u0026rsquo;s convenience via Microsoft Teams which was recorded and transcribed. Figure\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Represents the Semi-Structured Interview Guide utilised. Interviews were conducted online to facilitate access to women from anywhere in the UK. They were conducted between November 2023 and March 2024; participating mothers received a \u0026lsquo;Thank You\u0026rsquo; email following the interview. Consent forms, recordings and transcripts were securely stored, to be deleted on project completion. Following each semi-structured interview, extraneous data and participant identifying information were removed from transcripts and replaced with participant numbers; Participant 001, Participant 002 and Participant 003 .\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e\u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003eData Analysis\u003c/span\u003e\u003c/h2\u003e \u003cp\u003eSix phase Reflexive Thematic Analysis was used for analysis [39, 40]. Coding was undertaken using NVivo\u0026trade;, a computer assisted qualitative data analysis software programme, used with permission from Lumivero [42]. Analysis was performed on a semantic level, based upon participant\u0026rsquo;s own experiences and insights. Following initial familiarisation with the data set, 29 initial codes were identified which were reconsidered and refined through three further review cycles as the analysis evolved. Six code clusters and seven provisional themes were generated. These were revisited in an iterative approach before final themes were generated. Coding and theme generation were completed by [initials removed for review] but were reviewed and discussed by both authors.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eMothers were keen to share their experiences and participated due to their passion for breastfeeding, altruism, catharsis, and social isolation having a baby with DS, such motivations to participate in interviews are noted elsewhere [43\u0026ndash;45].\u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e. depicts participant characteristics. All three mothers had partners and gave birth in hospital. Participants 001 and 002 had breastfed their prior (unaffected) children for 12 months and 2.5 years each respectively. At the time of interview, Participant 001 had transitioned to feeding with formula milk, Participant 002 had successfully breastfed, and Participant 003was mixed feeding, endeavouring to reestablish breastfeeding.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant Characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant Number\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBirth Order\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eChild's age at time of semi-structured interview\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eAdmitted to Neonatal Unit\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eDiagnosis of Down Syndrome\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eInterview Length\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 months\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePostnatal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e1 hour 13 minutes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e002\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (of 5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePostnatal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e57 minutes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e003\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 months\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eAntenatal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e59 minutes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e shows two overarching themes, and six subthemes generated following analysis. Each theme and subtheme symbolises mothers\u0026rsquo; experiences and the key role of HCPs.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eThemes and subthemes reveal key practical and emotional barriers and enablers, explored in detail below supported with quotes.\u003c/p\u003e\n\u003ch3\u003eTheme 1: Professionals’ Attitude is Key\u003c/h3\u003e\n\u003cp\u003eThis theme encompasses mothers\u0026rsquo; experiences of HCPs, representing the substantial impact of HCPs\u0026rsquo; attitudes as key enablers, but conversely, sometimes unwittingly becoming a barrier themselves. Three subthemes were identified which reflected mothers\u0026rsquo; frequent experiences with HCPs.\u003c/p\u003e\u003cp\u003e‘It’s a Numbers Game’\u003c/p\u003e\n\u003cp\u003eParticipants reported that HCPs often focused on quantification i.e. input, output and weight took precedence over supporting establishment of breastfeeding. This appeared to be based on the HCP’s perception that babies with DS usually have orofacial anomalies impacting the suck–swallow-breath reflex and gastro-oesophageal reflux impacting breastfeeding. Bottle feeding, with formula or expressed breastmilk was easier to quantify, especially initially in hospital:\u003c/p\u003e\n\u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘They had like, this feeding chart to fill in to know how much he'd had […] it was just very regimented, and it made me and my partner a little bit regimented with his feeds like it was all we were talking about was like measurements and times.’\u003c/em\u003e (Participant 001)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘Whenever you see a doctor, there's always the question of, well, how much is she taking […]. So being able to put something in a bottle allows you to at least measure and to gauge against benchmarks […] with a bottle, you can just say X number. With breastfeeding you're not so sure, you're going in terms of time, but you're not 100% sure.’\u003c/em\u003e (Participant 003)\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThis precedence could elicit unwelcome responses. Whilst sufficient nourishment is key, the response below could be detrimental to motivation and self-esteem:\u003c/p\u003e\n\u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘I was all proud. Like, yeah, we had really long breastfeeds. It was like he was on my breasts for about an hour […] then the doctor said, oh, well, if he's on for that long it's indicating he’s not getting as much. He should be getting more in a smaller amount of time. So then I thought, oh, I'd wish I'd not told him the truth\u003c/em\u003e.\u003cem\u003e’\u003c/em\u003e (Participant 001 )\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003ePerseverance was expressed as focusing on input and output to ensure weight gain. For some this meant bottle-feeding expressed breastmilk until breastfeeding was established:\u003c/p\u003e\n\u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘It was a case of watching, paying a lot of attention to the to the numbers, you know, the amount in the bottle, the amount in the nappy and so it was kind of a bit of a numbers game.’\u003c/em\u003e (Participant 002)\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eEstablishing breastfeeding was overshadowed by HCPs anticipating challenges:\u003c/p\u003e\n\u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘An hour or two after she was born, the midwife came in with a little creamy bottle of formula, and she said OK, let's see if she's latching. So I put her to my breast. […] we tried and she did. She had a really strong suck, actually, but I think probably the midwife thought maybe we should just try and see if she would take a bottle. So she took 15 mls of formula and I was a bit kind of against it because I, you know, exclusively breastfed my other two [..] and then here comes the bottle and I didn't know why. In hindsight, I think maybe the midwife was testing to see if she\u003c/em\u003e [baby] \u003cem\u003ehad any struggles. And how strong and like sort of capable and healthy she was to ascertain whether she needed to get tube fed\u003c/em\u003e.’ (Participant 003)\u003c/p\u003e\n \u003cp\u003e‘…\u003cem\u003ejust seconds after birth, he wouldn't latch onto me and when he did, threw up straight away [..]. And then it was like a few hours later, he had a feeding tube’\u003c/em\u003e (Participant 001)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec11\"\u003e\n \u003ch2\u003eLuck of the draw\u003c/h2\u003e\n \u003cp\u003eHCP support and attitudes experienced differed, participants experienced highly supportive HCPs and conversely, detrimental comments from others. All 3 mothers appeared to be in a ‘luck of the draw’ scenario, dependent on their assigned HCP at any point. Whilst such variation may be experienced by any mother, the impact of negativity is exacerbated with a baby with DS, where HCP expertise and support are crucial:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e‘…\u003cem\u003eshe went ‘\u003c/em\u003e\u003cstrong\u003emove\u003c/strong\u003e\u003cem\u003e’ like that. And I was like that broke. I felt a bit inadequate around her. […] I felt really self-conscious every time I tried to breastfeed him.\u003c/em\u003e […] \u003cem\u003eWhereas the next nurse I had another night, she was lovely […] And she had so much to do and yet she kept pausing to come and help me breastfeed. So she was wonderful\u003c/em\u003e.’ (Participant 001)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipant 002 experienced a lack of encouragement:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e‘\u003cem\u003eShe really put a gloomy spin on it […] there was an absence of any positives, success stories or completely devoid of any positivity. There was absolutely no balance to her advice. You know, […] don't give up some women they've been able and they have succeeded so there was no information like that. It was just the negative slant.’\u003c/em\u003e (Participant 002)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eConversely, Participant 003 experienced extremely positive support.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘There were two ladies on the feeding support team that were actually really lovely and helpful. Admittedly, both of them had said that they didn't have any experience in babies with Down syndrome, […] I think they tried their absolute best and they were really helpful. I went back a few times and on subsequent visits. I do know that they had done some research in between to try and kind of tailor their advice’\u003c/em\u003e (Participant 003).\u003c/p\u003e\n \u003c/div\u003e\u003cbr\u003e\n \u003cp\u003e‘If they had had more expert knowledge’\u003c/p\u003e\u003cbr\u003e\n \u003cp\u003eAccessing expert support was a significant barrier, both Participants 001 and 002 viewed themselves as experts having successfully breastfed their prior unaffected children and grew frustrated at the lack of specialist expertise.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘…if she had had more confidence, […] more expert knowledge […]there was no where I could have gone for tips and tricks.[…] I grew frustrated and irritated at any sort of support because it was it was coming from a place of less expert and you know, this sounds arrogant, but they knew less than me and I found it irritating when I was getting advice and that really wasn't helpful.’\u003c/em\u003e(Participant 002)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘You would hope that there was some level of knowledge about the peculiarities of feeding a baby with Down syndrome. [..] I think her condition is so unique and specific that I wouldn't trust to go somewhere and expect advice to be good. Hopefully not, and it sounds like negative, but that's somewhat of my experience.\u003c/em\u003e’ (Participant 003)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘I do recall something she said to me, which I thought indicated she had gone and done some research because she hadn't said it the first few times. She told me she thought we should try a nipple shield because it would elongate the nipple. Their palates are a lot narrower and higher up, she thought maybe when [ baby] was sucking on my breast that the stimulus from the nipple hitting the palate just wasn't quite happening.’\u003c/em\u003e (Participant 003 )\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipant 001, as a primiparous mother, needed support in basic foundations, in addition to specialist support:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘…the foundations of breastfeeding actually make a really massive difference.’\u003c/em\u003e (Participant 001)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\"\u003e\n \u003ch2\u003eTheme 2; A new mother dealing with a huge emotional upheaval\u003c/h2\u003e\n \u003cp\u003eThis theme epitomises the immense emotional impact and adjustment experienced. Three subthemes were identified which illustrate potentially prolonged and significant emotional impact, the importance of coping strategies and self-belief.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec13\"\u003e\n \u003ch2\u003eCoping with emotions experienced\u003c/h2\u003e\n \u003cp\u003eAll three mothers spoke about the emotional impact of their breastfeeding journey. Both Participants 001 and 002 had received the diagnosis of DS postnatally, with no time to adjust or research DS:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘Breastfeeding is a very hormonal, centred thing and hormones depend on sort of your mental health as well, don't they? [….] I was just losing it with all the anxiety it was really hard because I was trying to breastfeed. I think from the very beginning it was all a bit of a car crash.’\u003c/em\u003e(Participant 001)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘I actually think that I became clinically depressed […]. When I look back at the amount of crying that I did, I think that for sure I had depression now, probably post-natal depression. And had I known in pregnancy that she had Down Syndrome, I would have had time to adjust. I would have had time to become more expert.’\u003c/em\u003e (Participant 002)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘…but it's me. I have the problem with myself. This is why I say like I'm just beating myself up for things that I really shouldn’t be’ (Participant 002)\u003c/em\u003e\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipant 001’s baby was transferred to another NNU, her situation exacerbated by DS, her experience may be similar to any mother with a baby in NNU:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e‘\u003cem\u003eI was like, really freaking out but at the time I'd lost my mind a little bit […] I was starting to just feel like we were in prison like I thought we are never going home.\u003c/em\u003e‘ (Participant 001)\u003c/p\u003e\n \u003c/div\u003e\u003cbr\u003e\n \u003cp\u003e‘ It’s a marathon’\u003c/p\u003e\u003cbr\u003e\n \u003cp\u003eThis subtheme illustrates the substantial additional physical and emotional effort required compared with an unaffected baby to overcome barriers frequently associated with DS such as sucking, latching, hypotonia and fatigue. Participants 002 and 003 could directly compare their experience to breastfeeding their prior, unaffected babies, whereas Participant 001 felt she needed to be two people:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘My experience was that it was a 24/7 process, so physical exhausting because it was such a marathon.’\u003c/em\u003e (Participant 002)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘I did struggle with it mainly because she was very sleepy […] I couldn't get her to latch for more than, say, 5 or 6 seconds of sucking, and then she would fall off so she could latch on, but she would just pop off like every few seconds […]basically that became the rest of our journey, like breastfeeding, pumping, formula.’\u003c/em\u003e (Participant 003)\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘I felt like I needed to leave my boobs in the incubator and then the rest if me in the maternity ward. […] I really need there to be two of me […] how do I divide myself?\u003c/em\u003e’ (Participant 001)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eProvision of substantial professional and family support was a crucial enabler:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘I had a very cooperative, highly invested participating partner in my husband who was available, indeed took time off work to mind the other kids and free me up to do this literally 24 hours. […] Initially it was a real heavy investment of time, I had the perfect idyllic situation. What husband's boss says take all the time you need?’\u003c/em\u003e (Participant 002)\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec14\"\u003e\n \u003ch2\u003eHaving self-belief\u003c/h2\u003e\n \u003cp\u003eParticipants 002 and 003 benefitted from prior successful breastfeeding experiences, empowering them with self-belief, knowledge, and perseverance:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e‘\u003cem\u003eThere was no encouragement, and I was lucky on that. I didn't really need that encouragement because my mother was a midwife and we grew up, me and my sisters, believing that, you know, breast is best.’\u003c/em\u003e (Participant 002)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eHowever, DS related anomalies such as sucking ability and fatigue thwarted breastfeeding:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u003cem\u003e‘If I could do it again, I would probably be a lot more trusting of her ability to get enough nutrition from me directly but back then, I think I was so worried and eager to just get anything into her, As much as I possibly could.[…] I would probably want to have more faith that she was going to be getting enough from me, just like my boys did and trust that. But then again, maybe she wouldn't have because she was just so sleepy.’\u003c/em\u003e (Participant 003)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eSelf-belief appears to be fundamental. Participant 001 experienced unhelpful comments when HCP support was crucial:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e‘She kept telling me I was doing things wrong.’\u003c/em\u003e (Participant 001)\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe barriers and enablers to supporting breastfeeding for babies with DS in this study are consistent with the wider literature, highlighting an ongoing gap in HCP support and expertise, and revealing the impact on breastfeeding of mother\u0026rsquo;s journeys. Some barriers and enablers may be generalisable to mother-baby dyads unaffected by DS or admitted to NNU, however, the perception of barriers to mothers and HCPs appear exacerbated by DS.\u003c/p\u003e \u003cp\u003eMothers\u0026rsquo; psychological health appeared inadequately supported and recognition of the highly significant role emotions have in breastfeeding substantially underestimated. Mothers may feel frightened and anxious following a postnatal DS diagnosis [46]; indeed, the substantial impact of emotional distress on breastfeeding a baby with DS has been documented [19, 24, 30, 33, 36, 47\u0026ndash;49]. Maternal psychological distress has profound physical effects on breastfeeding i.e. cortisol release passes to the baby via breastmilk; maternal cortisol may influence breastmilk composition altering both the macronutrient and immunomodulatory composition [50\u0026ndash;52]. Stress induced inhibition of oxytocin impacts milk production and ejection [53, 54], potentially resulting in an insufficient milk supply. Consequently, the emotional adjustment to a DS diagnosis may impact breastfeeding establishment and duration. This is an important barrier which could be addressed by improved professional support, and one also recognised in other recent studies [25, 31, 33] .\u003c/p\u003e \u003cp\u003eHCPs\u0026rsquo; assumptions about babies with DS appeared to override WHO recommendations that breastfeeding should be initiated within an hour of birth [1]; Participant 003 experienced that the midwife assessed her baby\u0026rsquo;s suck using a bottle of formula despite her experience and desire to breastfeed. Medicalisation appeared to take precedence, focusing on quantification, the emphasis being on DS as a medical condition, an issue also noted elsewhere in literature [4, 55]. Poor suck is also a recognised barrier [20] and was a reason for breastfeeding cessation in 21% of mothers in a large Italian study [19]. However, recently, poor suck or milk insufficiency is noted as the most experienced barrier in breastfeeding a baby with DS [56]. In this study, only Participant 003 received advice about using a nipple shield to overcome sucking issues after HCPs had researched breastfeeding babies with DS. In general, specific guidance including techniques and positions to optimise breastfeeding a baby with DS appeared lacking.\u003c/p\u003e \u003cp\u003ePositive About Down Syndrome (PADs) Maternity Experience Survey in 2022 found that 40% of mothers experienced assumptions by HCPs that DS meant they might not be able to breastfeed, and 66% of mothers\u0026rsquo; breastfeeding experience was upsetting or disappointing [57]. The UK National Institute for Health and Care Excellence note that breastfeeding support should be individually tailored referring to specialists as needed [58], and the Care Quality Commission found decreased HCP availability to all mothers over the last 5 years [59]. However, increased individualised professional support and intervention has been recommended for mothers breastfeeding babies with DS [5, 31, 33, 60]. Thus, routine provision of substantial emotional support is a key enabler.\u003c/p\u003e \u003cp\u003e UNICEF\u0026rsquo;s UK BFI guidelines have been adapted for babies in NNU, outlining guidance and steps to support breastfeeding babies in NNU [61, 62]. These guidelines state that breastfeeding should only be deprioritised in the case of medical instability (defined as apnoea, desaturations, or bradycardia) [61, 62]. Babies with DS are more likely to require tube feeding, which exacerbates their ability to establish breastfeeding [33], whilst UNICEF UK BFI guidelines apply to any baby, rather than specifically a baby with DS, in this study participants\u0026rsquo; 001 and 002 babies\u0026rsquo; spent time in NNU but did not appear to experience enactment of this guidance.\u003c/p\u003e \u003cp\u003ePositive breastfeeding experience is an enabler [22]; this study evidenced that experience provided an advantage but no guarantee of success. Participant 003 was mixed feeding and persevering to reestablish breastfeeding, whilst Participant 002 was able to establish breastfeeding over time. Perseverance is a known enabler; coupled with patience and HCP support, successful breastfeeding can be achieved [25, 30, 33, 56, 63, 64]. The results of this study concur with these findings.\u003c/p\u003e \u003cp\u003eAlthough recent studies have added to the body of knowledge [6, 31\u0026ndash;33], there remains much scope for future studies to add to the knowledge base, providing a platform for increasing HCPs expertise about breastfeeding in babies with DS to aim to increase number of babies with DS who are successfully breastfed for longer. A larger study including mothers from a broad range of backgrounds and experiences, and studies investigating HCP training needs could facilitate increased breastfeeding in babies with DS.\u003c/p\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003e\u003cspan type=\"SmallCaps\" class=\"SmallCaps\" name=\"Emphasis\"\u003eStrengths and Limitations\u003c/span\u003e\u003c/h2\u003e \u003cp\u003eStrengths include an in-depth exploration of 3 mothers\u0026rsquo; breastfeeding journeys, highlighting barriers and enablers experienced from maternal viewpoints.\u003c/p\u003e \u003cp\u003eRecall bias is a consideration as Participant 002\u0026rsquo;s child was 12, although recall bias of breastfeeding mothers has been found to be accurate after 6 and 20 years respectively [65, 66]. Furthermore, Participant 002\u0026rsquo;s memories were vivid and, as an HCP, had considerable insight into her experience.\u003c/p\u003e \u003cp\u003eThis small study was limited in scope, with time constraints and no funding. Medical records were not reviewed which could have provided an added dimension. Selection bias was minimised by enrolling eligible mothers chronologically at initial contact. A case study approach is not intended to be representative of the broader population; mothers\u0026rsquo; joining the study were motivated to participate in a study and three mothers only were included. Whilst the sample size was small, semi-structured interview lengths were between 57 minutes and 1 hour 13 minutes long, allowing a comprehensive and in-depth exploration of mother\u0026rsquo;s experiences, and a variety of contrasting experiences were revealed by participants, whose were geographically dispersed throughout the UK, rather than located in one Health Authority location. Whereas other studies may include a higher number of participants, semi-structured interview lengths noted were sometime much shorter, perhaps restricting the depth of information obtained, for example 15\u0026ndash;20 minutes [25].\u003c/p\u003e \u003cp\u003eAlthough immunomodulatory, development, nutritional, relational and societal benefits of breastfeeding are critical in this population, research regarding mothers\u0026rsquo; experiences is limited. This study, though small adds to the existing knowledge base and reinforces the need for widespread specific treatment pathways and increased HCP training and awareness to increase implementation of the UNICEF BFI in this population and enable babies with DS to be breastfed successfully for longer.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eBarriers and enablers to breastfeeding a baby with DS and support experienced have been explored in depth through interviews with three mothers. For these mothers, practical and emotional HCP support was variable despite the availability of specialist information in literature and via the DSA, PADs or other organisations with specific support groups. In these mother\u0026rsquo;s experiences, however, HCPs often lacked specialist knowledge. As DS is the most common genetic condition both in the UK [67] and worldwide [68], the availability of individualised specialist breastfeeding expertise needs to become more accessible, perhaps with additional peer support from an experienced breastfeeding mother with a baby with DS. Whereas a specific care pathway is noted in some Health Authorities [33] increased support via widely available specific care pathways implemented on diagnosis, and further effective implementation of the BFI to fulfil this unmet need would optimise enablers to increase success rates and overcome barriers.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eBFI\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eBaby Friendly Initiative\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eBUHSSREC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eBristol University Health Science Student Research Ethics Committee\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCQC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eCare Quality Commission\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eDS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDown Syndrome\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eDSA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDown Syndrome Association\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHCP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHealth Care Professional\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHMO\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHuman Milk Oligosaccharides\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eICH GCP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eInternational Conference on Harmonization Good Clinical Practice\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eMDT\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eMultidisciplinary Team\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eNHS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eNational Health Service\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eNNU\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eNeonatal Unit\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePADS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePositive About Down Syndrome\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePIS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eParticipant Information Sheet\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eEthics Approval and Consent to Participate\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eThis study was conducted in accordance with the Declaration of Helsinki and International Conference on Harmonisation Good Clinical Practice (ICH GCP). Ethical Approval was obtained from Bristol University Health Science Student Research Ethics Committee (BUHSSREC); reference 15831. \u003c/p\u003e\n\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eClinical Trial Number\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot Applicable\u003c/p\u003e\n\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eConsent for Publication\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eMothers provided voluntary written informed consent prior to participation in the study. The Participant Information Sheet and Consent Form also included information that short, anonymised quotes from their interview may be used in any publication resulting from this study but that identities were pseudo anonymised with a participant number (Participant 001, 002, and 003).\u003c/p\u003e\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003e \u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eAvailability of Data and Materials\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eThe datasets generated and analysed during the current study are not publicly available due to protection of participants identity and for confidentiality reasons. Pseudo anonymised interview transcripts are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003ch3\u003e\u003cem\u003e \u003c/em\u003e\u003c/h3\u003e\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eCompeting Interests\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eThis study received no funding\u003c/p\u003e\n\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eAuthors\u0026rsquo; Contributions\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eJD submitted and obtained ethics approval, wrote first draft of all project documentation , conducted the research including semi structured interviews, data analysis and write up.\u003c/p\u003e\n\u003cp\u003eSD conceived the original project idea, reviewed all study documents, and provided full supervision throughout the project including discussion of analysis and results.\u003c/p\u003e\n\u003cp\u003eBoth authors discussed and revised the project plan together, and both read and approved the final manuscript. \u003c/p\u003e\n\n\u003ch3\u003e\u003cstrong\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/strong\u003e\u003c/h3\u003e\n\u003cp\u003eAcknowledgements go to the Down Syndrome Association (DSA) for their support in reaching out to potential participants for inclusion in this study, and most importantly to the participating mothers for their time, experiences and insights in participating in semi structured interviews.\u003c/p\u003e\n\n\n\n\n"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eWHO. Infant and young child feeding 2021 [updated 09 June 2021. Available from: https://www.who.int/news-room/fact-sheets/detail/infant-and-young-child-feeding.\u003c/li\u003e\n\u003cli\u003eOHID. Fingertips Public Health Data: Office for Health Improvement and Disparities; 2024 [Available from: https://fingertips.phe.org.uk/search/bre\nastfeeding#page/4/gid/1/pat/159/par/K020\n00001/ati/15/are/E92000001/iid/92517/ag\ne/170/sex/4/cat/-1/ctp/-1/yrr/1/cid/4/tbm/1.\u003c/li\u003e\n\u003cli\u003eGavine A, Shinwell SC, Buchanan P, Farre A, Wade A, Lynn F, et al. Support for healthy breastfeeding mothers with healthy term babies. \u003cem\u003eCochrane Database Systemic Review\u003c/em\u003e. 2022;10(10):CD001141.\u003c/li\u003e\n\u003cli\u003eSooben RD. Breastfeeding patterns in infants with Down\u0026apos;s syndrome: A literature review. \u003cem\u003eBr. J. Midwifery\u003c/em\u003e. 2012;20(3):187-92.\u003c/li\u003e\n\u003cli\u003eMagenis ML, de Faveri W, Castro K, Forte GC, Grande AJ, Perry IS. Down syndrome and breastfeeding: A systematic review. \u003cem\u003eJ. Intellect. Disabil.\u003c/em\u003e 2022;26(1):244-63.\u003c/li\u003e\n\u003cli\u003eRodr\u0026iacute;guez AO, de la Puente SG, Arizmendi KAF, Robledo TTV. Breastfeeding in children with down syndrome. \u003cem\u003eBMC Pediatr\u003c/em\u003e. 2025;25(1):437.\u003c/li\u003e\n\u003cli\u003eVictora CG, Bahl R, Barros AJ, Fran\u0026ccedil;a GV, Horton S, Krasevec J, et al. Breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. \u003cem\u003eLancet\u003c/em\u003e. 2016;387(10017):475-90.\u003c/li\u003e\n\u003cli\u003eAndreas NJ, Kampmann B, Mehring Le-Doare K. Human breast milk: A review on its composition and bioactivity. \u003cem\u003eEarly Hum. Dev.\u003c/em\u003e 2015;91(11):629-35.\u003c/li\u003e\n\u003cli\u003eP\u0026eacute;rez-Escamilla R, Tomori C, Hern\u0026aacute;ndez-Cordero S, Baker P, Barros AJD, B\u0026eacute;gin F, et al. Breastfeeding: crucially important, but increasingly challenged in a market-driven world. \u003cem\u003eLancet\u003c/em\u003e. 2023;401(10375):472-85.\u003c/li\u003e\n\u003cli\u003eBaker P, Smith JP, Garde A, Grummer-Strawn LM, Wood B, Sen G, et al. The political economy of infant and young child feeding: confronting corporate power, overcoming structural barriers, and accelerating progress. \u003cem\u003eLancet\u003c/em\u003e. 2023;401(10375):503-24.\u003c/li\u003e\n\u003cli\u003eRollins N, Piwoz E, Baker P, Kingston G, Mabaso KM, McCoy D, et al. Marketing of commercial milk formula: a system to capture parents, communities, science, and policy. \u003cem\u003eLancet\u003c/em\u003e. 2023;401(10375):486-502.\u003c/li\u003e\n\u003cli\u003ePurdy IB, Melwak MA. 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The care of children with Down syndrome. \u003cem\u003eEur J Pediatr\u003c/em\u003e. 2010;169(12):1445-52.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"international-breastfeeding-journal","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ibfj","sideBox":"Learn more about [International Breastfeeding Journal](http://internationalbreastfeedingjournal.biomedcentral.com/)","snPcode":"13006","submissionUrl":"https://submission.nature.com/new-submission/13006/3","title":"International Breastfeeding Journal","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Breastfeeding, Down Syndrome, Mothers, Infant feeding, breastmilk, Trisomy 21","lastPublishedDoi":"10.21203/rs.3.rs-9211349/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9211349/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e \u003cp\u003eDown Syndrome is the most common genetic condition in the UK. Breastfeeding has immediate and lifelong benefits, yet assumptions and barriers thwart it in babies with Down Syndrome. This primary research study aimed to explore maternal experiences, investigating enablers and barriers and how they may be overcome.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e \u003cp\u003eUsing a multiple case study methodology, three mothers who either breastfed or attempted to breastfeed their baby with Down Syndrome participated in a semi-structured interview which were transcribed and analysed using reflexive thematic analysis.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e \u003cp\u003eOf the three mothers interviewed, one had transitioned to formula, one was mixed feeding, and one had successfully breastfed. Two overarching themes were identified, each with three subthemes \u0026lsquo;Professionals Attitudes are Key\u0026rsquo;, and \u0026lsquo;A Huge Emotional Upheaval\u0026rsquo;. Mothers\u0026rsquo; experiences were mixed, from negative and detrimental comments to highly engaged and supportive professionals. Two mothers were experienced at breastfeeding their prior children, but despite their knowledge, found accessing specialist expertise challenging. One mother was primiparous, her experience lacking emotional support and professional knowledge.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusions\u003c/b\u003e\u003c/p\u003e \u003cp\u003e Despite World Health Organisation guidelines and the UNICEF Baby Friendly Initiative guidelines, there appears to be a gap facilitating breastfeeding babies with Down Syndrome, a specific population where effective implementation of the Baby Friendly Initiative may be transformative in both short- and long-term health and development for babies with Down Syndrome. Maternal perseverance and increased professionals\u0026rsquo; expert support are key enablers. Access to specialist knowledge at diagnosis via specific care pathways and effective implementation of the Baby Friendly Initiative for mothers with a baby with Down Syndrome would optimise enablers and minimise barriers.\u003c/p\u003e","manuscriptTitle":"A Qualitative Study Investigating the Barriers and Enablers to Supporting Breastfeeding for Babies with Down Syndrome","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-09 16:43:52","doi":"10.21203/rs.3.rs-9211349/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-04-24T13:55:07+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"142568024365452473740387958490504554418","date":"2026-04-06T18:23:54+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"9544518304126548643141594337035672999","date":"2026-04-05T11:33:20+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-05T08:50:11+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-28T01:13:28+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-27T11:49:13+00:00","index":"","fulltext":""},{"type":"submitted","content":"International Breastfeeding Journal","date":"2026-03-24T11:26:04+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"international-breastfeeding-journal","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ibfj","sideBox":"Learn more about [International Breastfeeding Journal](http://internationalbreastfeedingjournal.biomedcentral.com/)","snPcode":"13006","submissionUrl":"https://submission.nature.com/new-submission/13006/3","title":"International Breastfeeding Journal","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"5edd7682-834a-4ac8-b343-af27e651c50d","owner":[],"postedDate":"April 9th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-09T16:43:52+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-09 16:43:52","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9211349","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9211349","identity":"rs-9211349","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}