Breastfeeding and Down Syndrome – Baby Adonis’ story

Our baby boy Adonis arrived 3 weeks early in November 2022 and had a month-long stay in the Neonatal Intensive Care Unit (NICU). During our time in the NICU, feeding was a big topic that a lot of healthcare professionals had an opinion on because of his diagnosis of Down Syndrome.

I always wanted to breastfeed my child and being told that it may not happen for me was heartbreaking as I had already had the relaxing, natural, water birth I wanted, taken from me (I had to have an emergency c-section in the end but I did try). Nonetheless, I was adamant that again, I wanted to at least try, even if a lot of other people doubted him. I’m so glad I did!

This is my breastfeeding story with baby Adonis who has Down syndrome…

This is my breastfeeding story with baby Adonis who has Down syndrome…

I was so proud to express colostrum for my little boy with Down syndrome

Pretty much straight away I started collecting colostrum. I was so proud of my body for producing something so nourishing to help my baby boy and his newly developing immune system.

As soon as I could wiggles my toes, my husband was able to wheel me down to NICU. I was so excited to deliver my first syringe of colostrum! It was not a lot but it soon kicked in and I went from producing a syringe worth on day 1, to a small bottle on day 4. At this point we were feeding Donny by NG tube as he was hooked up to a lot of machines and had to have oxygen and light therapy. But that didn’t mean that he couldn’t have a little bit in the syringe to get the taste of mummy’s milk. 

We attempted his first latch on day 2

On day 2, we attempted his first latch and he surprised us all by getting the hang of it almost straight away! Although we did still have to NG tube feed him at the same time because he would get tired very quickly so not feed for enough time.

My advice to anyone in this situation is to not give up on them because overtime, he started to associate being put to the breast with feeling full from the NG tube feed. I believe this was key to him feeding so well now at 8 months old!

I had to start expressing when we found there was a bowel obstruction

On day 3 we found out that Donny had an obstruction in his bowel so the surgeons advised that we stop feeding and give fluids whilst we look at options to clear it. This was heartbreaking! He was doing so well and my worry was that he wouldn’t want to come back to breastfeeding after having to stop so early.

On day 3 we found out that Donny had an obstruction in his bowel so the surgeons advised that we stop feeding

We spoke to the speech and language therapist and decided to keep the association going by expressing until I was empty then putting him to the breast just for the feeling as well as making sure that if he didn’t want to latch, we had a dummy for him to continue to suck on. This meant that he still strengthened his jaw and didn’t forget the skill of sucking. I can’t lie, having to pump through the day and night until I was empty was hard. I honestly just felt like a cow being milked that much ahaha! It was all worth it in the end to keep my supply up for him and we ended up with a big freezer full of milk by the end of it! 

Returning to breastfeeding was a struggle

When we returned to breastfeeding after a few weeks it was a struggle. He had gotten very used to the texture of the dummy so one of the nurses suggested that I use nipple shields to mimic that texture. It also give him something firmer and larger to suck on as my nipples were quite small. This worked wonders for us and we continued to use them until very recently. You can get these from most hospitals but if not then they sell nipple shields on Amazon and I think they are definitely worth a try if your little one isn’t taking too well to breastfeeding at first and you want to do it. 

I will say that stress plays a huge role in the production of milk (or lack of), so I tried my best, under the circumstances, to keep calm, get plenty of rest when I could and eat regularly. Even when my supply did drop slightly, I spoke to lactation consultants through the NHS and they recommended ways of power pumping to increase my supply.

I was adamant to continue our breastfeeding journey

I was adamant to continue this journey for my boy as he needed the extra support for his immune system. Plus, he couldn’t process formula very well which we knew was quite common in children with Down syndrome. 

I was adamant to continue this journey for my boy as he needed the extra support for his immune system.

Donny is now a very happy 8 month old baby who continues to love boobie milk as well as pureed fruits and veggies too! Nothing holds this boy back and I honestly think it is because of our resilience to keep trying different things and our faith in him to get the hang of it in the end, no matter what it is or what other people assume about his abilities. 

Remember! Eat, Sleep, Express, Repeat…

Love, Shellie and Adonis x