by Sarah Ojar
Down syndrome is a naturally occurring genetic condition caused by having an extra chromosome. Typically, we have 46 chromosomes, 23 pairs. People with Down syndrome have an extra copy of chromosome 21. Every year World Down Syndrome Day has a different theme and it’s always celebrated on the 21/3 to represent the chromosome arrangement.
This year’s theme is ‘End the Stereotypes’
For people with Down Syndrome, stereotypes can cause exclusion and cause them to be underestimated. This can begin at birth and continue into adulthood. A stereotype is a set idea that people have about what someone or something is like.
Stereotypes can be positive, negative or neutral, but they are often fully or partly inaccurate. They are often based on limited knowledge or personal experience and can often be reinforced by the media or by others influence. Once a stereotype is formed, it can be very difficult to change.
Even newborn babies with Down syndrome do not escape stereotypical views and opinions. That is something that, at Positive About Down Syndrome, we are trying to change. We often hear of medical professionals being surprised that a baby is ‘doing so well’. There is an assumption that a baby with Down syndrome will always come with a myriad of clinical issues, which is incorrect.
There is another big stereotype surrounding newborn babies with Down Syndrome and that is that they will not be able to breastfeed.
We conducted a survey of families we work with in 2022 and found that 40% of people were told that their baby may not breastfeed solely because of them having Down syndrome. This is not correct. With the right support it’s very possible for babies with Down syndrome to breastfeed. A more realistic statement which manages expectation would be, that babies with Down syndrome have a great chance at breastfeeding, they may achieve this easily or it may take a little longer to establish.
Breastfeeding Challenges
Two of the most common challenges babies with Down syndrome can face when trying to breastfeed are low muscle tone and being sleepy.
Low muscle tone will affect almost all babies with Down syndrome to a varying degree. It can also present differently in different areas of the body. Low tone to the jaw and mouth can affect latch and how efficient milk transfer is, whilst general low tone in the body can cause instability and fatigue. We can help this by using more supportive holds such as the dancer hold where the hand is used to help with attachment.
Babies with Down syndrome can often be very sleepy and may not show as many early feeding cues. Things like alternating sides feeding, breast compressions, taking or a layer of clothing and tickling feet can all help with a sleepy baby.
Breastfeeding Support
Our 2022 survey also showed that breastfeeding support is extremely important in the mental health of our families. 66% said that they felt upset or disappointed when they thought about their breastfeeding experience and 30% said it had a negative effect on their mental health.
Inclusion is so very important and is something we must all take responsibility for. It’s easy to think of it as something to consider among our peers in the workplace or in school and nurseries. But inclusion starts at birth. It includes the fundamental right to choose to feed your baby how you wish and for people working with you to support that.
At Positive About Down Syndrome we work with medical professionals to help boost their confidence in working with babies with Down syndrome through online training and webinars. We also have some breastfeeding publications aimed at supporters and parents, all of which you can find on our website: https://downsyndromeuk.co.uk/health/feeding/
If you have any questions or would like to get in touch, please email: sarah.ojar@downsyndromeuk.co.uk
