Monday, July 16, 2007

Article for Nursing Mums

I was asked to write this article for the Nursing Mum's group on MSN:

Nursing my baby with Down syndrome

When you have children you open your life to the unknown, the unexpected and the uncontrollable. This was brought home to me with a bang during the first weeks of my son Alfie's life. After months of worrying about how my older son would cope with a new sibling, his birth brought a realm of much more urgent worries to the fore. How long would he be in intensive care? Why wasn't his bone marrow working? Why did he have bruises all over him? When would he be able to breath on his own? Why was he so floppy? What is a bone marrow for that matter?! After much testing it was determined that he had been exposed to CMV when I was pregnant, he had prenatal jaundice, and Down syndrome. Right. Hard swallow. That's OK. I think.

Breastfeeding was the one thing that I could do. Well, not straight away because Alfie was in the ICU wired up like a christmas tree and I'd just had a c-section, but thanks to two marvellous midwives I was soon on my way. One student midwife, bless her, sat with me with a little syringe and pulled off dew drops of colustrum while I hand expressed during the first night (or was it the second - it's all a blur now). And Lizzie, the independent midwife that we'd hired (in the hope that we'd have a home birth), was incredible. She very gently forced me to express milk with a machine every two hours and eat regularly. Because it'd only been 9 months since I'd stopped nursing my older son, the milk was soon coming in. I was so proud of myself!

It's a bit difficult to get ownership of your child when you can't hold them and other people are helping them to live. But I was determined to breastfeed and to be a mother to my baby as soon as I could. After five days of tube feeding I was allowed to nurse him myself. Alfie's low muscle tone meant that he couldn't hold his head up and found it difficult to latch on but I started by getting him to suck on my milky finger and then gradually managed to replace it with my nipple. All the breastfeeding training I'd had with Noah was invaluable - "tummy to mummy", "nose to nipple", "express milk into his mouth to get him started". I also had to ensure that he was fully supported at all times and didn't come unplugged from all the monitors or get suffocated by my breast (with his low muscle tone he wasn't able to pull himself away so easily). We fumbled about a bit, but after a day or two of trying he'd learned what to do and was able to come of the IV.

Feeding Alfie made everything feel alright. Whatever the medical diagnosis he was my baby and he responded to me and loved to eat! We were just mummy and baby and the rest of everything could just get lost.

During the first few weeks at home I fed Alfie every two hours - and he fed for much longer than my other son had - an average feed was about 40 minutes. With Noah I'd fallen asleep during feeds and co-slept but that wasn't an option with Alfie - he had to be held horizontally, high up across my chest, with his head fully supported - which meant me sitting upright and being quite awake. It was inconvenient but I was so delighted to have him home, and to hold him in my arms, I really didn't mind.

CMV is a virus that can lead to deafness, blindness, brain damage and bone marrow problems. I am certain that breastfeeding helped Alfie to recover from this illness in a remarkably short time. The doctors had to retest him twice because they couldn't believe that his viral load had diminished to 1% in just three weeks.
Having Down syndrome means that Alfie's immune system doesn't work as well as it should. During the first year of his life has been in hospital twice more with a virus and pnuemonia. Both times his abilty to nurse has kept him out of the intensive care unit, calmed him and helped him to recover more quickly.

Other mothers I know have expressed and bottle fed their babies breast milk if they were in hospital for lengthy periods. If your baby has medical complications you need them to have the very best nutrition available. Some mums have found that it's taken weeks to get nursing started, but perserverance and a belief that it really is possible to breastfeed their child have meant that they've won through in the end.

Nursing has also helped Alfie to develop muscles in his mouth that will help him learn to speak, it will add a couple of points on to his IQ - for which I'm sure he'll be grateful - and most importantly, it's helped him to grow into a good sized, gorgeous, jumping and squealing one year old boy. He's still nursing well and I plan to continue for as long as possible - one of the benefits of Ds is that your teeth can come through a lot later so I've not had to worry about getting nipped!

The first few weeks of nursing Alfie showed me just what he was capable of, and taught me to have the highest possible expectations of, and for, my son. It also helped me to just be his mum, and to know that I was doing something that was good for him when otherwise I felt so helpless.

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:


Jodi said...

You've been tagged for 8 random things...

L. Noelle said...

Hi Alice! I just wanted you to know I gave you an award today, so I hope you can check it out! Hope all is well! Congratulations on crawling Alfie, that's fantastic!

Amy said...

Hi. I just found your blog through Noelle at Jaden's Journal. Please stop by and visit:

Mind if I link?