‘Before my daughter was even born, I'd had two midwives and a consultant all pretty much tell me she'd not be able to breastfeed because of having Down syndrome’, advises Sarah mum to Lucy, who is still breastfeeding at 19 months.
At Positive about Down syndrome (PADS), we are passionate about ensuring parents have access to contemporary, relevant and accurate information, as well as positive and meaningful support from both peers and professionals. This research has been conducted to establish how well-informed and supported expectant and new parents are today around breastfeeding their baby with Down syndrome.
The health benefits of breastfeeding are well known; however, at PADS, we are of the view that the impact on a mother's mental health and wellbeing should also be taken into account by medical professionals when considering feeding recommendations.
We believe, that in general, there is no reason why most babies with Down syndrome cannot be breastfed, if this is mother's preference.
PADS surveyed 329 mothers of a baby with Down syndrome born in the UK since 2016. Here is what we found:
- Over three quarters of the mothers breastfed their baby with Down syndrome (77%)
- Almost half (46%) reported they had been advised by a healthcare professional that they may not be able to breastfeed their infant purely because of baby having Down syndrome
- Over half (54%) advised that they felt they did not receive the support they needed around breastfeeding from their midwifery team
- Of the 23% of women who did not breastfeed their baby with Down syndrome, a staggering 89% had planned to breastfeed
- At six months, 66% of women were breastfeeding their baby with Down syndrome; in contrast to UNICEF's data for the UK with 34% of women breastfeeding
- A total of 27% of mothers breastfed their infant with Down syndrome beyond 18 months.
We urge medical professionals to not assume that because baby has Down syndrome that they will struggle/not be able to breastfeed, but rather to respond to the individual baby and mother's needs. Many women commented on how demotivating and disappointing it was to be told it would not be possible/be a struggle to breastfeed, often before baby had even arrived/tried to feed.
‘A lot of times we kept being told it would be difficult, which doesn't help mentally-when breastfeeding isn't always easy regardless!’
While babies with Down syndrome can be more prone to hypotonia (low muscle tone), and some will require heart surgery within the first few months of life and, as a result, may tire quicker, women should be encouraged and supported to try different feeding positions-many of our mothers advocate the use of dancer hold, the biological nurturing position, and the use of nipple shields many advise as a game changer. However, each baby and mother should receive individual support.
For those babies who require support via enteral tube feeding, women should be encouraged to pump so breastmilk can be enterally fed and to continue to put baby regularly to the breast, particularly when being tube fed. The growth chart developed specifically for monitoring the weight of babies with Down syndrome should be used from term, with the growth of any pre-term baby born before 37 weeks being recorded on the NICM chart.
There was considerable feedback from women, that all too often medical professionals are not supporting their feeding choice and that there is a propensity for the baby to be NG tube fed, ‘for convenience’.
‘I feel cheated and let down by the medical staff. I was told my baby couldn't be solely breastfed when she could have been. Not being able to choose how I fed my baby has had a knock-on psychological effect around feeding.’
Parents commented that there was a tendency to attribute any breastfeeding challenges to baby having Down syndrome-diagnostic overshadowing; before checking for routine issues such as tongue tie.
A baby's health is clearly everyone's priority but we are concerned at the number of babies who are being discharged with NG tubes, with no plan towards removal and little-to-no speech and language input to encourage oral motor development. Melissa wrote:
‘They told me we would not be discharged until my son was on a bottle. I asked about impact on my supply and his speech development but was given no answer. At an extremely vulnerable time, this was very distressing. Breastfeeding is hard for a lot of mums but I feel like we were written off in the hospital. Had we had a more positive experience and encouragement, I feel this would have given me more confidence to continue at home.’
For a new parent, coming to terms with the news baby has Down syndrome can be a difficult time, and we believe that the impact on a mother's mental health and wellbeing should be taken into account when considering feeding recommendations. We know that often new parents are overwhelmed with information around baby's potential future health needs and the inability to breastfeed and/or medicalisation of tube feeding can create an emotional barrier to the bonding and connection between mother and baby.
Aside from missed health benefits, the common concerns that mothers express around not being able to breastfeed either at all or for less time than would have liked, can have a negative impact on a woman's wellbeing and mental health. Phrases that mothers expressed include: desperately disappointed, a feeling of letting baby down, baby no longer feeling like mine, complete lack of control, something else that wasn't normal, a lack of connection and not being able to meet my baby's needs.
One mum whose baby had required NG tube feeding prior to heart surgery writes:
‘Breastfeeding was essential to my bonding. It was in stark contrast to the initial medicalised route we were on for the first four months. I felt it “gave me my baby back”. I felt confident I was doing all I could for him and his immune system.’
When women are well informed and supported, while there can be additional challenges for breastfeeding a baby with Down syndrome, the breastfeeding experience can bring so many benefits-to both baby and mother. Aside from the known health benefits, women report an increase in bonding between mother and baby, improving a mother's mental wellbeing; a feeling of accomplishment and pride for the mother; an increase in a mother's confidence in her ability to meet her baby's needs, and satisfaction in the knowledge that the breastfeeding may well improve not only the general health of baby but their oral motor skills and so, in time, speech development.
Kirsty breastfed Rory until he was 16 months, at which point he weaned himself, just like his older brother did.
‘I was offered support from the midwife breastfeeding team who were experienced in supporting breastfeeding with babies who have Down syndrome. Everyone was supportive and it was actually easier to establish than my eldest who does not have any additional needs.’
In order to provide both parents and professionals with a real insight in to the reality of breastfeeding a baby with Down syndrome, PADS has published ‘The Lived Experience: Breastfeeding a baby with Down Syndrome’.
PADS provides ongoing support via our very active and supportive closed Facebook group DSUK PADS Breastfeeding peer support. Members include mothers who have/are still breastfeeding their baby with Down syndrome, and we have trained breastfeeding supporters with the BFN, ABM and F.A.B, as well as an NHS infant feeding support worker.
PADS is always keen to collaborate with maternity units and universities to provide resources and training to midwives and other health professionals, with our training drawing upon the real-life, recent experiences of our members together with evidence-based research.
For further information, please contact our Maternity Coordinator Lu on 07967 738045 or via email lucienne.davies@downsyndromeuk.co.uk
Recommendations
- Discussions and plans around an expectant mother's breastfeeding expectations and hopes to be prepared and shared
- Discuss harvesting of colostrum with expectant women
- For medical professional to not assume that a baby with Down syndrome will not breastfeed
- For the impact on a mother's mental health and wellbeing to be taken into account by medical professionals when considering feeding recommendations
- Pathways to be discussed prior to discharge with parents of tube-fed babies around the plan to remove the NG tube
- Speech and language therapy to be involved while baby is in hospital and prior to baby's discharge, to support baby's oral motor skills development if being NG tube fed
- Greater training of as well as awareness and knowledge of lactation specialists to signpost women to
- For medical professionals to promote the value of family centred care, seeing each baby as an individual and to work with parents to support their unique breastfeeding journey
- The Down syndrome PCHR insert developed for babies with Down syndrome by DSMIG to be swapped out in baby's red book.