On the news this morning, I heard that there were new, less invasive and less dangerous tests to find out if your unborn foetus has Down’s Syndrome.

 

This is a great step forward, I guess.

 

If I had been given the opportunity, if I had know Susan would be born with Down’s Syndrome, would I have terminated the pregnancy. I don’t know. Quite likely.

 

I’m really having quite mixed feelings about this whole issue. I know for some people it is the opportunity to have the “perfect” child they want. I know that to have a child with a disability is a life long struggle. I suspect, that given a choice, I would have  said No to having Susan. And what would I have missed out on. Almost 20 years of struggle with getting services I needed, with finding money as a single parent, with the worry of knowing my child was never going to do some of the things other children were doing, of grieving for the child who is “different”. This is only a short list of the problems involved in living with a child with a disability.

 

However, what else would I have missed out on? I would have missed the innocence of a Susan. The incredible zest for life, even when she was very ill. I would have missed out on almost 20 years of memories. Almost 20 years of unconditional love. This list again, is a short list of the advantages of living with a Susan.

 

Which is more important? I don’t know. Living with a Susan for almost 20 has become part of who  I am today. I can’t imagine who I would have been without Susan.

 

Again, however, the cost to the community, particularly now that links are being made between the prevalence of Down’s Syndrome and Alzheimer’s Disease. Apparently 25% of people with Down’s Syndrome will develop Alzheimer’s Disease before they are 50, and by the time they are 70, 75% will develop Alzheimer’s Disease. These are much higher percentages than in the “normal” community. So for every child born with down’s syndrome, there are costs to the community, not only emotional terms but also in monetary terms.

 

So is this a good thing or a bad thing. I don’t know. I can see both sides of the fence. Each time I talk to someone who says they have had an abortion because their baby was likely to have Down’s Syndrome, I think I grieve a bit. I grieve for what the parents could be missing out on. I grieve for the fact that someone else didn’t want a Susan. Maybe if I stop thinking of all children with Down’s Syndrome as being a “Susan”, maybe I will fee differently. Maybe I won’t.

 

Another point is that we don’t know the purpose of genetic and chromosomal deformities in our evolution “damaged goods”. If we make everyone the same, if we remove all possibility of differences in our society, what are we doing to the evolution of the human race? I don’t know the answer to that question. No one really does. But whether you believe in evolution or religion, isn’t there a purpose for the “imperfect” in our world? Do we all have to have perfect teeth? Everyone have a high IQ? Does everyone have to be perfectly healthy? What are we doing to the world if we eradicate all these things?

Madeleine

Thursday, 20 March 2008