Feeding with Down's syndrome

I met Sam during my time studying for my IBCLC lactation consultant qualification. Sam was pregnant at the time. She gave birth to her gorgeous daughter Roisin in 2019. Roisin has Down syndrome. In order to raise awareness of Down's syndrome on World Down syndrome day 2020, Sam is sharing her feeding journey.

Sam and Roisins’ story

The antenatal period

When I found out at 13 weeks that our baby might have Down's Syndrome one of my many worries was not being able to breastfeed. I read about all the possible feeding difficulties such as low muscle tone affecting the suck and latch and a large tongue, which can get in the way. There were not very many positive stories. I am so passionate about breastfeeding, I fed my eldest daughter for over 2 years, I loved our breastfeeding relationship so much so that I trained to be a peer supporter to help other mothers and I now work as an infant feeding support worker on a maternity ward. I was so determined to breastfeed this baby!

A strange thing happened the day before I got the Down's syndrome test results. I was on a lactation study day about babies with additional needs, including Down's syndrome. We saw a beautiful video of babies breastfeeding, by Julia’s way which made me cry, I thought it was pregnancy hormones, but I’m so glad I saw it. I was planning to have a home birth with Róisín and everything was fine with my pregnancy, until at my 36 week scan they picked up that the placenta was possibly failing, I had two days to prepare practically and mentally for needing to have a c section. I wrote a birth plan that said I wanted immediate skin to skin if possible, I wanted to do everything I possibly could to try and help with getting breastfeeding off to a good start.

I had started hand expressing at 36 weeks so I had a few syringes of colostrum just in case I needed them.

Birth and the early days

We were fortunate that Róisín did really well at birth and I had skin to skin straight away with her, and for some time afterwards. She was a tiny 5lb and very sleepy but she had a little go at breastfeeding during that time. I had my doula with me who supported me to try a laid back position for the first feed. Her suck felt weak at first but I continued to feed her colostrum regularly from a syringe and did finger feeding also. I did lots of hand expressing in the first hours and days and then used a pump. I produced good amounts of colostrum, which I fed to her.

On her second day she had some jaundice that needed phototherapy for a few hours, but she was fine after that. We spent a lot of time in skin-to-skin and practiced at latching over the 5 days that I was in the hospital. She got better and stronger at breastfeeding every day, but I was still quite anxious. As I do breastfeeding support for a job and know a fair bit about it, obviously that was helpful but I almost felt like I knew too much! On paper I was prepared and knew what to do in a practical way but when it’s your own baby it’s quite a different matter, and the rational part of my brain was not working!

I was feeding every 2 hours, it took time trying to wake her up, breastfeed and then give her a top up of expressed milk to make sure she was taking enough. Initially she didn’t lose too much weight, about 5% and I was really pleased, but once we were home she didn’t gain much weight despite me being sure that she was latching well and getting plenty of milk, judging from what came out the other end. I became a bit obsessed with how many wees and poos she was doing!

It was a very stressful time of constantly feeding, doing breast compressions to keep her awake and sucking, trying to get her to feed for a long time on one breast to make sure she was getting enough of the fatty milk towards the end of the feed, expressing, so much expressing! And worrying if I was producing enough, and was she was feeding for long enough. I was having to wake her in the night and try to feed her, express and give a bottle as she was sleeping too much, it was exhausting. She lost her newborn chubbiness and was starting to look quite skinny. It was so upsetting to see. I find it hard to look back at photos of that time.

Growth and specialist support

In the end I couldn’t keep up with it all. Having sought lots of advice from friends, professionals and a very supportive dietician I decided to give myself a break and give a supplement of high calorie formula milk. I felt like a failure! I put way too much pressure on myself, but eventually her weight picked up and we carried on breastfeeding alongside the supplement with no issues. We are still mix feeding today! Roisin has two bottles of high energy milk a day, and still breastfeeds a lot, she loves a boob nap and it is what gets her to sleep at bedtime and comforts her throughout the night (several times!). She has gone up almost two percentiles on her weight chart and her paediatrician recently described her as ‘thriving’ on a letter she sent, which I was over the moon to read. I think she will always be smaller than average, it’s just the way she is and is quite common with Down syndrome, but I’m so happy to see some chub on her!

Weaning

We started weaning at around 7 months as she just didn’t seem ready before then, she couldn’t sit and her head control wasn’t great, she picked up eating purées really well and we’ve not had any issues with solids, she loves her food and eats most things. We practice having finger foods once a day and she’s getting better at picking food up and getting it into her mouth, and it’s a good way to keep her busy.

Babies with Down syndrome may sometimes have some difficulties with breastfeeding, so getting the right support is very important, but it is most definitely possible!

You can follow Sam and Roisin over at @thoselittlelegs on instagram