Sarah is the breastfeeding lead for Positive About Down Syndrome, as well as a volunteer supporter for BfN and the National Breastfeeding Helpline, and mother to Zephaniah. Here she gives information about World Down’s Syndrome Day, and how to support breastfeeding a baby with Down’s Syndrome. You can read more of Sarah and Zephaniah’s story on Sarah’s blog, Chromosomes and Curls.
March 21st is World Down’s Syndrome Day. Its part of trisomy awareness month and the date 21/3 is significant to represent 3 copies of chromosome 21.
Each year has a theme and this years theme is ‘Inclusion Means’. What does inclusion mean to you? It often conjures up images perhaps of education/schooling/work place/friendship groups/clubs. However inclusion starts earlier than that at birth and one way to ensure inclusion for babies with Down’s Syndrome is by making sure families get the individual support they need when it comes to their feeding choices. For families who want to breastfeed they can often face negativity right from the offset. Many parents report being told by medical professionals that babies with Down’s Syndrome cannot breastfeed or probably won’t be able to, which along with not being correct, can be hurtful and damaging the breastfeeding relationship.
For supporters, there is much that can be done and be considered in order to facilitate an inclusive feeding journey for families. Here are some tips when supporting families who have a baby with Down’s Syndrome.
- Say congratulations! In the same way you would congratulate any new parent. Don’t say things like ‘I’m sorry….’ ‘Oh no….’
- Make a safe space for the parents. They may have had a prenatal diagnosis and have had weeks or months to adjust to their unexpected news, or they may have found out postnatally, so whilst promoting positive language, it’s important to let them safely sit in their feelings which could range vastly from parent to parent. Avoid leading with intrusive questions around whether the family had any prenatal testing unless they raise it and want to talk about it of course.
- Back to basics. As with any baby start with position and attachment. Along with some issues that may occur as a result of the baby having Down’s Syndrome, the baby and mother will still face the same challenges as anyone else so those should be worked on and eliminated first. Often the usual challenges are overlooked and then blame is placed on the baby having Down’s Syndrome. This is called medical overshadowing.
- Language matters. Avoid using the terms ‘downs baby’. Within the Down’s Syndrome community a person first language is preferred so ‘a baby with Down’s Syndrome’. Also avoid making generalisations about babies with Down’s Syndrome as with any baby/child they are their own person. There are some fantastic language cards available at https://www.languagecreatesreality.com
- Recognise that it can in some cases take longer to establish breastfeeding in a baby with Down’s Syndrome and sometimes there is a journey involving tubes, bottles, pumping etc before transitioning to feeding directly from the breast and some people continue to use expressed breast milk. It often takes up to 3 months to establish feeding directly at the breast and I’ve seen it as late as 6 months.
- Familiarise yourself with common issues that babies with Down’s Syndrome face such as low muscle tone, tiredness etc.
- Make sure the baby’s red book has the correct Down’s Syndrome insert with the separate growth chart to avoid any concerns over weight gain.
- Have signposting information to local or online support groups available. It can often be a lonely and confusing time and from experience families sometimes feel alone and isolated, so to have someone to signpost them at this stage is so valuable.
Here at Positive About Down Syndrome we have created a lived experience leaflet sharing peoples breastfeeding stores. You can find that here
https://positiveaboutdownsyndrome.co.uk/breastfeeding/
We also have support groups on Facebook for expecting and new parents.
Pregnancy: https://www.facebook.com/groups/dsukpositiveaboutdownsyndromegreatexpectations/
New Parent: https://www.facebook.com/groups/padsnewparents/
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