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 http://en.wikipedia.org/wiki/Cytomegalovirus#Pregnancy), 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 http://www.babyfriendly.org.uk/health.asp

The Laleche league have really good information about feeding your baby if s/he has Down Syndrome: http://www.llli.org/FAQ/down.html
as has this Australian site: http://www.breastfeeding.asn.au/bfinfo/down.html
http://breastfeed.com/resources/articles/benefits.htm

I liked this article too:
http://babiestoday.com/articles/98.php?wcat=26


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.

4 comments:

Rebecca said...

I happened upon your blog while doing a blogger search. Chocolate is weak, but it tasty yummy.

I think you have a great deal of valuable information on here and I would love to link to you from my blog, if it's ok.

If not, I hope you won't mind if I continue to read.

Rikki said...

I came over from Rebecca's blog. I agree wholeheartedly. Thank God my midwife told me right away that babies with DS can learn how to breastfeed like other babies, no matter what others say. But it helped that I already was an experienced breastfeeder at the time.
Sean also was in hospital for about a week, and it takes a lot of dedication to breastfeed in a situation like that, but it is well worth it. And, of course, chocolate always helps, too, LOL.

Anonymous said...

I came across your blog while searching for any information on breastfeeding a DS baby. I have been breastfeeding my daughter Katie with DS for 11 months, and am considering weaning her b/c she's getting four teeth up top and she's been biting for about three months. I was wondering if you had any advice as to what to wean her to- a bottle or a sippy? She can't make a seal with her mouth around a sippy, and I don't know if I want to wean her to a bottle, only to eventually wean her again to a sippy. Any thoughts would be greatly appreciated!
Thanks
Tricia

Alice said...

Hi Tricia
Alfie started biting me about a month ago and I had to wean him too. I thought about trying rubber nipple protectors so that I could continue nursing but couldn't find any easily so I decided that 18 months of nursing was probably enough.

I weaned him to a bottle, and a sippy cup, and a cup with a straw. We interchange each of them so that he doesn't get used to having one particular type, and is still able to get enough milk without struggling. I also tried a medicine pill bottle, with a hole pierced into the safety cap, and a juice carton straw inserted. He could hold that easily in one hand and it helped him get used to a straw. The only problem was that it was so small he finished the drink too quickly.

It can take a couple of days to get used to a sippy cup, and that is what our early interventionist recommended - precisely so we didn't have to wean him from a bottle as you say. But our older son had a bottle until he was four (just in the evening) and then gave it up very easily, so I don't really mind if Alfie has a bottle for a while, as long as it's not the only thing he'll drink from.

I tried to express milk for a few weeks but it's so time consuming I've switched to formula.

Anyway, I hope that is helpful. It's something that we've just been doing so your question is very timely!

Very best,
Alice