Monday, October 02, 2006

Nursing my baby with Down Syndrome

One thing has been nagging at me a bit - it's some advice I read in hospital in the abbreviated leaflet from the Down's Syndrome Association in the UK: "You may have chosen to bottle-feed your baby for whatever reason and many babies with Down’s syndrome find it easier to feed from the bottle. It will not harm your baby to have formula milk. The important thing is that you and your baby should be as contented as possible!". I think that this is poor advice (not the bit about being contented though!). The information on their website is excellent and includes lots of tips for feeding and being patient with it, but that wasn't what I read during the first few days when I was struggling to get started. The benefits of breastfeeding are all the more important when your baby has special needs, and women don't get enough support and encouragement to breastfeed adequately at the best of times, let alone when their baby might need some extra support. It's really hard to learn a new skill when you've got a new born baby and there's a whirlwind of advice and new information being thrown at you, and it would be much easier to not breastfeed during these first few days - but in the long run it could make you and your baby so much happier if you are able to provide the benefits of natural milk.

I am so glad that I had a midwife who was so supportive and that I had breastfed Noah beforehand so I was confident that it would be possible. Noah was very hard to get started because he kept sucking his lips instead of my nipple - I had to spend days trying before we got the hang of it, so I wasn't so thrown by Alfie's initial splutteriness and need for physical support.

On top of Down Syndrome, Alfie had a poorly bone marrow and deafness in one ear due to a virus called CMV (cytomegalovirus, jaundice, and some other illness which hospitalised him for another week. Altogether he had so many tests and pricks and pokes, and we were so worried, at times the one thing that kept me going was that I had this lovely little baby who was suckling just like any other. It helped me to just be his mum, and know that I was doing something that was good for him when otherwise we felt so helpless.

Alfie was in an oxygen tank for the first few days so I couldn't hold him but my midwife made me express milk two hourly and I soon had enough to try feeding him. This meant that they let me take him home much earlier than they might have.

Also, the CMV left his system in such quick time that the hospital questioned the results and re-tested him. This was a big deal - if the CMV had remained in his system at a high level, he would have had a really nasty treatment (a bit like chemo) that would have lasted 6 weeks, would have meant surgery and other complications and undoubtably would have affected his development. As it was, I'm sure the breastfeeding helped him to fight off this illness and has reduced his chances of getting more complications. Here's some information about the health benefits of breastmilk

The Laleche league have really good information about feeding your baby if s/he has Down Syndrome:
as has this Australian site:

I liked this article too:

People told me 'take each day as it comes' and 'take one day at a time' but I really don't know what that means. I'm always thinking about the future, and what fun is it having a baby if you can't think about how they will grow up? These are my tips for dealing with your baby being in hospital:

Imagine the very worst thing that could happen and then visualise yourself dealing with it and coping with it. Then let it go.
After that imagine the outcome you want and let that be the reality you live with for the time being.

Take the phrases 'I can't cope' and 'It's not fair' and 'Why me/him/her' out of your vocabulary. If you don't say them, it helps you to stop feeling them.

Eat a great deal of good quality chocolate*.

*This might seems a bit weak but it helped me.