Prader Willi Syndrome

Now that Thomas is nearly three months, there seems to be a little more time for doing things besides caring for him (which I'm enjoying so much!), like writing this blog. I would like to use this blog to write about Prader Willi Syndrome (PWS), about what it's like to have a child with this fairly unknown syndrome. But to do that I should go back to the beginning. I had never heard of PWS before Isabel was born.

Isabel was born in the summer of 2010 in the hospital and very soon something appeared to be wrong. It may be strange but I didn't notice this myself at first, I only thought she was beautiful, maybe a bit quiet and weak, but she had wonderful red hair (and lots of it!) and the prettiest little fingers.

However Isabel did not cry, she didn't ask for food and would not drink when given milk. She had to be tube fed. And she was just too quiet, she would just lie still when I changed her nappy.

All this meant that we had to stay in the hospital for some time, while doctors tried to figure out what was the matter with her. Luckily I could stay with her all the time, we had a room for the two of us where Roelof and Rosalie could visit whenever they wanted. But it was a heartbreaking experience to see my little baby surrounded by all that medical equipment. Sometimes I hardly dared to pick her up because of all the cables that were attached to her (monitoring heart, breathing and oxygen levels). She also needed some extra oxygen at times.

Infants with PWS have a very low muscle tone, they usually don't cry and have alot of trouble drinking. Many babies have to be fed through a tube, which can be necessary for several months. A they sleep and sleep and sleep!

We were so happy to see her liven up when we gave her a bath. That was just about the first time the we realized: she's here with us! She sees and hears us and there is a wonderful person in that weak little body.

To make a long story short (because Thomas is getting hungry!): after three long weeks we could finally take Isabel home with us. It was about two months after she was born that we learned she had PWS. That is actually a very quick diagnosis, and that's good because we have learned so much about this syndrome since. It was, of course, shattering news, to hear that your child will probably never be able to lead a 'normal' (whatever that may be) life, but will always be dependent on care from others. But after learing more about PWS we started to realise that life can still be very meaningful and also enjoyable for Isabel and we decided to just love her, just as she is, and to try not to worry to much about the future.

I would like to write more, but I need to get back to baby Thomas now. These days, I seem to do just bits and pieces of all that I want to/need to do. But, that's caring for little children!

By the way, my spelling may be wrong now and again. English is not my native language, and I don't have the time to check it now.