30 June 2008

Chapter 8: Did You Know?

Whenever I meet other downs or heart mammies, this is one of the first questions I am asked. Did you know before he was born? No. But I wish I had. Most of the other mammies didn't know either. But I did meet one recently who did know about her daughters heart condition and down syndrome. I asked her if she was glad that she had found out, and she was. I believe in 20 week anomoly screening. This option should be given to every woman in this country. It seems at the moment that only a few hospitals offer it, the others are just too overwhelmed with the current population boom and just don't have the resources. Now as I've said before, I am young and the chances of my having a child with downs was 1:1200. That's nothing, but yet it happened. And we didn't know.

I am not angry that his three number 21 chromosmes were not picked up on. It's the heart that gets me. He has three major defects. The most noticable being the absence of the centre wall of his heart. How did no one see that? I'm a "first timer", and so was scanned at almost every visit in the hospital to check the heart beat.

"Hello, sit up there and we will listen to the heart and measure your tummy"
"bu doom... bu doom... bu doom"
"Fine, any problems?"
"Ok, see you in 8 weeks"

And that was it, two hours waiting and queing for five minutes with a doctor. The doctors had to get through so many women, they just didn't have the time to be thorough. I don't blame anyone, it's no ones fault that Cathal has a dodgy heart, I just don't understand how it was missed.

What would we have done? Well, nothing, but we could have been prepared. It would have made no difference to Cathal's health, and he would probably have been whisked off to ICU as soon as he was born. We would not have had the few hours with him that we did. On the other hand, we could have told our famillies before hand, calmly and face to face. We could have done all the research and have been ready to face anything. We could even have had all the forms ready to fill out, maybe partly filled, and have had a list of our entitlements.

I know that there is a fear that if people find out at 20 weeks, they may abort. That is a real concern, and I believe that in the US, if something is wrong, you are given a three week 'extension' in case you feel you can't cope with a special needs baby. This would never have been an option for us, from the moment I found out I was pregnant, I felt an unwavering urge to protect that little baby. Not the cluster of cells, the baby. The 12 week dating scan just reinforced that feeling ten fold. We could see him shacking his little closed fists at us, and we fell in love.

If we do have another in a few years (what do you think The Daddy?), I will be demanding every test in the book. We should be given the choice, I am a firm believer in choice.

Did you know? Would you have wanted to?


Anonymous said...

Dear Cathals Mammy,

Congratulations on the birth of your beautiful baby boy. Cathal is really cute in his fathers day outfit. It is obvious that Cathal has two wonderful, loving and caring parents who truly love and adore him. Wishing you all the
best for the "big" operation next year.

Nick McGivney said...

Good for you, Cathal's Mam. We've had this discussion before I know and we will again too no doubt, and I have huge issues with various tests that are available in the rest of the world, to help screen out the imperfect. Eugenics is such a horrible word in my ears. However I know that there is this side too, where much good prep work can be done to help the little guys on the way. I have great faith that Cathal will embarrass you in years to come with his athletic prowess! Apropos this post, friends of mine told me recently of a young woman they know in her thirties whose doc during a routine check up heard a murmur. When they got it checked out in was a large hole in the mid-wall that nobody had ever known about. I think I'd be taking the day off work! Obviously a repair was called for, but how amazing is the human body? She lived a totally normal life despite this abnormality. Ignorance can be bliss I guess. Speaking of 'normal', this might make you smile:


Anonymous said...

CAthal is an absolute dote.
We found out about our sons major heart condition at our 20 week scan and I feel I wish we hadn't. Fom that moment on, I hated being pregnant, hating being prepared for the worst, hating worrying every second of every day.
On the other hand, at least they were ready for him when he was born and everything was done that could be.
On the down side, I shudder if I even see a pregnant woman.