Letter: Down's syndrome: litigation, inspiration, and the problems of choice

Mr Patrick McVeigh
Monday 24 August 1992 18:02 EDT
Comments

Your support helps us to tell the story

From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.

At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.

The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.

Your support makes all the difference.

Sir: I am the parent of a two-year-old girl who has one additional chromosome and therefore has Down's syndrome. There is no doubt that when my daughter was born it was a difficult and unexpected occurrence (my wife was 33 at the time).

After a while I realised my difficulty was coming to terms with my own and other people's negative associations with handicap and Down's syndrome. The reality could not be more different. We have found a lot of support from friends and family, and our daughter is beginning to reveal her different and amusing view of the world. Yes, she does require more time and support, but so do some normal children. Many children born with Down's syndrome have happy and fulfilled lives, providing great joy to their families.

A high score on the Bart's test allows parents to consider amniocentesis, which enables a mother to terminate her pregnancy at 22/23 weeks. I am glad I did not have to participate in such a decision at such a late stage because I realise now that we might not have had the opportunity to bring up our daughter. Having said that, we made a decision to have an early chorionic villus sampling test for our third child - we didn't wish to have two children with Down's syndrome if it didn't require us to have a late termination of the pregnancy.

As you see, I still grapple with the problem of choice, but at least I now know something of both sides of the story; the danger is that parents faced with a 'poor' Bart's test will be stampeded into doing something that, if they knew all the facts, they might choose not to do. After all, how good is the counselling and support likely to be?

What if the Bart's test is moved on to detect people who might be more likely to drink and drive, become joyriders, travellers or muggers? None of which a person with Down's syndrome is likely to participate in.

Yours faithfully,

PATRICK McVEIGH

London, W12

22 August

Join our commenting forum

Join thought-provoking conversations, follow other Independent readers and see their replies

Comments

Thank you for registering

Please refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in