My Breastfeeding Story: Feeding My Baby with Special Needs in the NICU

Next in our series of real mums’ breastfeeding stories, we hear from Rachel, whose son Reuben, was born with Downs Syndrome. She writes about her struggles of learning to feed her baby with special needs whilst he spent time in the NICU. 

Nobody tells you that is can be so hard to feed your baby, whether you’re breastfeeding, expressing or bottle feeding with formula, it can be really hard to get to grips with it all. Especially with a baby with special needs, you can be overwhelmed with advice on what people think is best!

My gorgeous boy Reuben was born in April 2020. Throughout the pregnancy we knew there was a high chance of him having Downs Syndrome, and this was confirmed soon after he was born. He was placed straight onto my chest at birth, and the midwives helped me to get him feeding. However, he went a bit floppy and was struggling to breathe so he was taken up to NICU.

We spent 3 weeks in neonatal care in total, where Reuben was tube fed to start with, and we attempted breastfeeding whenever we could. He was 4 weeks early so got tired really easily and he had jaundice which also made him sleepy.

He gradually woke more and more, his tongue was checked to make sure he could feed and we had a lactation specialist help us with latching/positioning. The whole time he was in NICU I was expressing and tube feeding him. It was difficult for him to latch with his tubes up his nose, and it got to the point where the only thing stopping us from going home was his feeding. We tried bottle feeding which he eventually took to, and we were allowed home.

I continued to try breastfeeding at home for up to 8 weeks, but it soon got exhausting. I was attempting to breastfeed for around 30 minutes (both getting soaked in milk!), and then expressing for 40 minutes plus, sorting/sterilising bottles, changing him then by that time he was hungry again! We were attempting about once a day but that soon just turned into extra cuddle time.

I was happy he was getting my breast milk and was growing, so we continued to express and bottle feed. Reuben has laryngomalacia (floppy larynx) and started to cough/struggle a bit with bottles so we were given a thickening powder to help. This made feeding more of a hassle having to mix the bottles up etc, and he was going longer between feeds. This meant I couldn’t just take the milk out of the fridge and leave it for the next feed, as he’d sometimes go over 6 hours without needing a feed.

Just before he was 12 weeks, he was hungry while I was expressing, so I thought, may as well give breastfeeding a go while they’re out! Amazingly, he took to it like he’d been doing it since birth! We’ve been breastfeeding for just over 2 weeks now and it saves so much time on washing and sterilising etc.

It’s been a long journey, and we’re still learning, but it’s such a rewarding one!

#nobodytoldme #positiveaboutdownsyndrome

Thank you to Rachel, for sharing her breastfeeding experience. If you would like to share your breastfeeding story please email