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Establishing breast feeding in infants with Down syndrome: the FADES cohort experience
  1. Georgina M Williams1,2,3,
  2. Sam Leary1,
  3. Sofia Leadbetter1,
  4. Stu Toms1,
  5. Georgina Mortimer2,
  6. Tim Scorrer4,
  7. Kathleen Gillespie2,
  8. Julian P H Shield1
  1. 1 NIHR Bristol Biomedical Research Centre Nutrition Theme, University of Bristol, Bristol, UK
  2. 2 Translational Health Sciences, University of Bristol, Bristol, UK
  3. 3 Department of Paediatric Endocrinology, Noah's Ark Children's Hospital for Wales, Cardiff, UK
  4. 4 Neonatology, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
  1. Correspondence to Dr Georgina M Williams; georgina.williams{at}


Objective To describe breastfeeding prevalence and maternal experience in infants with trisomy 21.

Design Longitudinal cohort study.

Setting Participants from UK recruited through websites, social media and local collaborators: neonatologists, community paediatricians and research nurses.

Subjects Infants under the age of 8 months with Down syndrome (DS) recruited to the Feeding and Autoimmunity in Down Syndrome Evaluation Study between 1 September 2014 and 31 August 2017. Seventy participants: median age 20 weeks (IQR 13–29 weeks) at initial questionnaire.

Main outcome measure Breastfeeding prevalence at 6 weeks and 6 months among infants with DS.

Results The prevalence of exclusive breast feeding among study participants was similar to the general population (13/61, 21% vs 23% at 6 weeks, 2/54, 4% vs 1% at 6 months). However, the prevalence of breast feeding (exclusive or combination feeding) among the study participants was higher than the general population (39/61 64% vs 55% at 6 weeks, 32/59 54% vs 34% at 6 months).

Conclusion Although there may be challenges in establishing breast feeding in infants with DS, our data suggest that exclusive breast feeding is possible for some, and the prevalence of breast feeding is comparable to the prevalence in the general population.

Trial registration number ISRCTN12415856

  • Epidemiology
  • Syndrome

Data availability statement

Data sets may only be available by individual request to the corresponding author.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:

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  • Infants with Down syndrome (DS) have anatomical and physiological features that may affect their ability to feed but this is phenotypically variable.

  • Infants with DS have associated medical conditions including congenital heart disease and gastrointestinal abnormalities, which may impact on early feeding.

  • Prevalence of nasogastric (NG) tube feeding in infants with DS has previously been reported as up to 40%.


  • Breastfeeding prevalence among infants with DS is equivalent to the general population at 6 months.

  • Infants with DS can receive exclusive breastmilk feeds for over 6 months.

  • Early and extra postnatal support for breast feeding may be beneficial.

  • At least half of infants with DS in this UK wide cohort study receive NG feeds.


  • This study seeks to promote an increase in tailored feeding support for mother’s of infants with DS.

  • Key findings from this study may contribute to positive changes in breastfeeding advice and support for mother’s of infnats with DS.

  • The high prevalence of infants receiving NG tube feeds warrants further research and potentially change in policy within neonatal units.


Down syndrome (DS) is caused by trisomy of chromosome 21. DS is usually diagnosed antenatally or in the first few days of life by recognition of salient features.1 A number of associated conditions including congenital heart disease and gastrointestinal complications can cause additional challenges during the neonatal period.

Current WHO recommendations are that infants should be exclusively breastfed until 6 months,2 this is based on the health benefits for mother and baby. Prolonged exclusive breast feeding is possibly protective against some autoimmune conditions including type 1 diabetes and coeliac disease for which children with DS are at increased risk.3–5 Furthermore, there is evidence that breast feeding exclusively or combined feeding to a lesser but significant extent, enhances immunity and is protective against otitis media and respiratory tract infections6 both being more prevalent in children with DS.7

Infants with DS may have oral, anatomical and physiological abnormalities affecting their ability to feed normally: as with other features of DS there is phenotypic variability. To breastfeed effectively, a tight oral/nipple seal needs to be induced with the tongue making a groove and the lips sealing around the nipple. For a baby with DS, the flattened shape of the tongue and low tone in the oral structures means that establishing breast feeding may be challenging.8 9 Lewis and Kritzinger reported that 40% of DS infants had been naso-gastric (NG) tube fed during the neonatal period illustrating some of the issues with feeding.10

Many countries have registers that provide data on people with DS. These have facilitated retrospective studies providing statistics on for example: birth and death rates and congenital anomalies. However, longitudinal birth cohort studies of infants with DS in the UK are rare.11–14 The FADES (Feeding and Autoimmunity in Down Syndrome Evaluation Study) was established to investigate early feeding and the development of autoimmunity. Medical and detailed feeding data are collected by mothers from birth and includes both feeding in the hospital settings and at home. A study hypothesis is that infants with DS have difficulties with establishing breast feeding and are therefore introduced to formula feeds at an earlier age. The aim of this paper is to describe breastfeeding prevalence and experiences among infants with DS and their mothers, in the first 6 months of life. This paper describes findings from the analysis of the feeding data collected between September 2014 and August 2017, to explore this and compare to breastfeeding prevalence in the general population.


FADES is an ongoing UK wide study recruiting infants with DS antenatally or in the first 8 months of life. Exclusion criteria are infants born with a child protection plan, fostered or adopted, >8 months or parents do not speak English. Participants are recruited either by health professionals including neonatologists, community paediatricians and research nurses or via web recruitment through the Downs Syndrome Association, Downs Syndrome Scotland, and other websites and social media A combined feeding and medical questionnaire is completed by families at recruitment (initial questionnaire), at 6–8 months of life (7-month questionnaire) and then at 12 months (12-month questionnaire). Feeding questions are based on those from the Infant Feeding Survey (IFS) 2010,15 medical questions are related to conditions associated with DS, hospital admissions and antibiotic usage. Mothers are able to provide free text answers to some questions and quotes from these have been used to illustrate key points. A full qualitative study and analysis has not been completed as part of this feasibility study. This paper presents data collected in the first 3 years of recruitment from 1 September 2014 to 31 August 2017 when the feasibility assessment was conducted.

Statistical analysis

As a feasibility study, analysis of the questionnaires is descriptive as there is not enough power to statistically test for associations. Frequencies were derived and presented as percentages for categorical variables. For continuous data, means and SDs were presented for data that were approximately normal, and medians and IQRs for non-normal data. Analysis used STATA V.15. Comparisons are made with the general population from the results reported by the IFS 2010.15

Public involvement

The study design including recruitment and data collection methods were established following discussion with and involvement of the Downs Syndrome Association. Local members (all of whom were parents of a child with DS) advised on the wording and feasibility of the feeding and medical questionnaires.


Seventy participants were recruited between 1 September 2014 and the 31 August 2017. Sixty-one out of the 70 participants (87%) completed the initial feeding and medical questionnaire at a median age of 20 weeks (IQR 13–29 weeks). Of these, approximately a quarter (n=15) were diagnosed antenatally with DS. Table 1 summarises maternal characteristics and birth details. Over half were born by normal vaginal delivery: median gestation, 38 weeks (IQR 37–39 weeks), mean birth weight of 3 kg (SD 0.5 kg). Most infants were born in hospital units, three were home deliveries. Median hospital stay after birth was 5 days (IQR 3–9 days).

Table 1

Maternal characteristics and birth details

Over half (34/61, 56%) were admitted into a special care baby unit (SCBU) with almost a third of these (10/34, 29%) primarily due to poor feeding. Half of the infants for whom data were available, required NG tube feeding as shown in table 2. All admitted to SCBU were NG tube fed. Of the 31 infants who were fed via NG tube, 12/31 (39%), primarily required NG tube feeds in SCBU due to feeding issues, the remainder due to medical comorbidities (37% with multiple medical indications). NG tube feeds were mostly expressed breastmilk or a mixture of expressed milk and infant formula. NG tube feeds were required in 19/31 (61%) participants for less than 2 weeks.

Table 2

Feeding in SCBU (special care baby unit) and NG (naso-gastric) tube feeds

Of the mothers receiving an antenatal diagnosis for their baby, 13/15 (87%) were told about problems relating to feeding but only three (3/15, (20%)) received any specific antenatal advice about breast feeding a baby with DS. Most mothers initially breastfed their baby, with 47/60 (78%) having skin to skin contact within 24 hours of birth (table 3). Feeding problems that were experienced in the hospital or birthing centre by mothers, included those commonly associated with infants with DS such as poor latch and lethargy. Although hypotonia is one of the explanations frequently given as a cause for feeding difficulties, only one parent described this feature. Mothers provided responses to an open question regarding feeding their baby in the hospital, birth centre or unit as illustrated in the quotes in table 4.

Table 3

First feeds and feeding after discharge

Table 4

Quotes from free text boxes in initial, 7 months and 12 months questionnaire

Of the 61 mother/baby dyads, 39 (64%) continued some breast feeding for over 6 weeks (table 5) (including infants who received mixed infant formula and breastmilk feeds). Over the age of 6 months, this decreased to 32 (32/59 (54%)) still breast feeding in part. These percentages are higher than in the general population, levels reported in the IFS 2010 (55% and 34%, respectively).15 The prevalence of exclusive breast feeding in the study population at 6 weeks was 13/61 (21%) compared with 23% in the general population in the IFS 2010.15 By 6 months of age, two (2/54 (4%)) participants were exclusively breast fed. This compares to 1% of general population. Using data from the initial and 7-month questionnaires, the median age at which some formula milk was introduced in the whole cohort was 5 days (IQR 1–21 days). Formula feeds were introduced by 52% of mothers within a week in the IFS 2010 and 75% by 6 weeks.

Table 5

Stopping breast feeding

Just over half of the participants had problems associated with feeding after discharge from hospital (table 3). The most common problems were lethargy or faltering growth. Three mothers mentioned their infants being readmitted to hospital with poor feeding. Less than three-quarters, 34/47 (72%) had the correct ‘DS insert’ in their Red book (the personal child health record that is given to every baby). The ‘DS insert’ contains the appropriate growth charts reflecting a tendency to ‘normal’, slower growth trajectory in this condition compared with non-trisomy infants.16

Over half of the mothers said that they would have liked to have breastfed for longer (20/37, (54%)). Reasons for stopping breast feeding included inadequate breastmilk supply, issues with expressing breast milk and their infants having faltering growth. The quotes in table 4 illustrate the reasons mothers gave for stopping breast feeding.

Mothers were asked ‘What would have helped you breastfeed longer?’ the answers included not introducing bottles as early, not needing to express, being at home and having more specific support. Quotes from the initial, 7-month and 12-month questionnaires in response to this question are given in table 4. Some mothers also used this question to explain that they did breastfeed.


In our cohort exclusive breast feeding among the infants with DS at 6 months is comparable to the general population (4% vs 1%). Apart from exclusive breast feeding at 6 weeks when prevalence was similar (21% of infants with DS vs 23% in the general population), breast feeding (exclusive or combination feeding) among the study participants was higher at all time points than levels reported in the general population.15 This was surprising and does not support the hypothesis that hypotonia and oromotor issues associated with DS significantly alters ability to breastfeed. This is an important and encouraging message for mothers and should inspire midwives and health professionals to support breast feeding. These findings suggest that the frequently heard mantra, that infants with DS probably will not breastfeed successfully, needs to be changed.

Formula was introduced very early at a median of 5 days with 77% having started by the age of 6 weeks. Overall, over half of the mothers were still breast feeding beyond the age of 6 months (including infants who combination fed with breastmilk and infant formula) which is a very positive message for families. This is higher than the 34% at 6 months within the general population. Due to the wording of the questionnaire, it was not possible to distinguish between those who directly breastfed or those who gave expressed breastmilk, and this would be useful to include in future questionnaires.

Over half of FADES infants were admitted to SCBU, all being NG tube fed. In around 40%, issues with feeding were responsible for NG placement and for most of these participants, this was also the reason for SCBU admission. Almost 70% of the mothers said that having their baby in SCBU had affected their ability to feed the way they would have liked. This is possibly open to intervention as some admissions might be prevented with more specialised/tailored support on the postnatal wards. Some hospitals will only have one or two infants born a year with DS, possibly leading to automatic SCBU admissions with increased levels of anxiety around potential complications and associated conditions. In terms of oromotor skill development, it is important that infants have the chance to feed orally early on. This is postulated to be important for the development of oral skills, tolerance of tastes and textures and is also important for social development.17 Most infants in our cohort required NG tube feeds for less than 2 weeks but one-third also required feeds to be stopped altogether at some point and were put onto intravenous fluids.

NG tube feeding was required for some infants due to dehydration, jaundice, polycythaemia and vomiting. Although classified as a ‘medical’ reason, inability to feed may have contributed or caused these issues. Other ‘medical’ reasons included prematurity, ventilation or surgical abdomen. Prevalence of NG tube feeding in the general population and in the typical DS population are poorly reported. One-third of those NG fed infants continued to receive exclusively expressed breastmilk. Many of the infants were fed using expressed breastmilk either for NG tube feeds or for top up feeds via alternative feeding methods including bottle.

Lethargy was the most commonly reported problem with feeding after discharge with far fewer citing poor latch than during the initial admission. Importantly 16% of the mothers said that poor weight gain or weight loss was an issue. It is of concern that over a quarter of the mothers reported that they were not given the correct ‘DS insert’ in their Personal Child Health Record (‘Red’ book).16 Healthy infants with DS gain weight more slowly than other infants and it is important to account for this when assessing feeding and growth. If an infant with DS is plotted on a standard growth chart they will appear to be failing to thrive and a mother who is successfully feeding her baby, may be told that she needs to supplement feeds, start formula feeds if she is breast feeding or even that her baby needs admission to hospital.

Although the number of participants is relatively high compared with other cohorts of infants with DS, the small number in this paper means that caution needs to be used when drawing conclusions. Those infants born with a child protection plan, fostered, or adopted, and parents who do not speak English did not meet the inclusion criteria. Therefore, we are likely to have excluded some of the most disadvantaged of our population. The higher levels of breast feeding in the study compared with the general population may in part, be due to selection bias. Mothers who have chosen to take part in the study may already have a specific interest in infant feeding. In the UK, higher breastfeeding frequency is described in mothers over 30 years of age (87%),15 which may also explain the higher level of initial breast feeding in FADES. The karyotype for the infants in the cohort was not requested which might be considered a weakness of the study. FADES potentially might include children with mosaic DS who can be phenotypically milder although this is rare: Only one to three percent of DS children have mosaicism.18

Reasons for stopping breast feeding were similar to the IFS 201015 with inadequate breastmilk supply and faltering growth being common. However, a large proportion mentioned issues surrounding expressing milk. This highlights the need for mothers who are expressing to receive tailored support. Mothers were asked ‘What would have helped you breastfeed longer’ the responses indicated that mothers understandably wanted ‘normality’, they wanted their infants to be well, to not require bottle or expressed milk and to be at home. Although it is not possible to change these factors for many, every effort should be made to listen to maternal wishes and assist where possible. Some mothers used this questionnaire to voice their frustration at alternative feeding methods being introduced ‘too early’ or ‘against their wishes’.

It is a strength of the study that the families recruited were representative of the general population of children with DS, with similar numbers of children having associated conditions including cardiac abnormalities as reported in other studies.19 The eligibility criteria were broad and did not exclude any medical conditions. A further strength is that the study was UK wide reducing selection bias. Those who could not speak English were excluded and this may have had altered feeding results with cultural differences in early feeding.20 Translating all study documentation however was not possible for the multiple languages now represented in UK population.

These results raise some important questions and highlight potential opportunities for interventions in relation to feeding support for mothers of infants with DS. Any advice given to mothers on feeding a baby with DS based on this study should include the message that infants with DS can be exclusively breastfed or receive a combination of breast and formula feeds. However, some may need to include expressed breastmilk and alternative feeding methods. Providing mothers with access to tailored support and advice specifically around expressing should be included, as should information on NG tube feeding.


It is clear that many infants with DS in our cohort can breastfeed exclusively for 6 months as per WHO guidelines. Our study shows that almost two-thirds of babies with DS were being breast fed at 6 months. This may require significant perseverance from the mother and supportive professionals, as establishing breast feeding can be challenging. Oromotor difficulties and significant medical needs may underlie some challenges, but overall, mothers who wish to breastfeed should be encouraged and supported to do so as success is possible.

Data availability statement

Data sets may only be available by individual request to the corresponding author.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by National Research Ethics Service (NRES) Committee South West-Central Bristol 23rd April 2014 14/SW/0030. Participants gave informed consent to participate in the study before taking part.



  • Contributors GMW was the chief investigator and PhD student, wrote the protocol, completed the data collection, data analysis and drafts of the manuscript. GMW is the guarantor for the paper. SaL was the lead statistician on the study and PhD supervisor. She contributed to the protocol and study design, data analysis and draft manuscripts of the paper. SoL provided the administrative support and coordination for the study, she was involved in participant recruitment and data collection. ST contributed to the study design, online questionnaires and managed the study database. GM contributed to the data collection and coordinates sample collection for the FADES study. TS recruited participants for the study and reviewed draft manuscripts of the paper. KG (PhD supervisor) contributed to the study protocol, study design and reviewed draft manuscripts of the article. JPHS (PhD supervisor) contributed to the study protocol, study design and reviewed draft manuscripts of the articles.

  • Funding This study was funded through the National Institute for Health Research Biomedical Research Centre Funding Scheme.

  • Disclaimer This is an independent opinion from Bristol Biomedical Research Centre in the National Institute for Health Research Biomedical Research Centre Funding Scheme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health and Social Care.

  • Competing interests None delclared

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.