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You the jury June 2009 - Would you abort a baby if you discovered it had a disability?

Is it right to think about future quality of life when faced with a problem pregnancy or is the sanctity of life paramount? By Elizabeth Openshaw

Yes

Marina Levy, 50, has three children aged 19,16 and 11, and lives in North London with her husband, Dan, 55. Marina runs a charity and is a freelance writer.

My brother, Sherban, was just 17 when he died, having suffered with muscular dystrophy (MD) all his life. I was very close to Sherban as a child, and felt it was my job to keep him moving. I thought that if he jumped off a chair every day, then he'd always be able to jump off a chair. I don't remember exactly when that stopped but one day I came home to see him in a wheelchair.

As a teenager, I distanced myself from him. It hurt to see him so dependent on Mum for everything so I distanced myself emotionally and transferred my attention to my friends. Sherban's condition deteriorated until his body gave up. Sherban had Duchenne muscular dystrophy, the most severe form, passed down by mothers to sons.

I grew up believing that it really mattered that I never brought this illness into another child's life. I met my husband when I was 19 and had no maternal instinct. He was keen to have children but I was scared. Eventually, aged 31, I became pregnant, but I was absolutely sure that if I was carrying a child with MD, I would have an abortion. I didn't have the stamina or strength to cope with a child that was so disabled. I know I was very loved as a child, but the overall memory of my childhood is a sad one. I didn't want to repeat that sadness.

At the scan of my first pregnancy, I couldn't relate to the foetus on the screen. I wouldn't allow myself to get close to the baby in my womb, so the idea of removing it if necessary wouldn't seem such a terrible thing.

I had the early CVS (chorionic villus sampling) test at eight weeks, but no conclusion was reached, and back then there were no tests to determine categorically if I was a carrier.

Fortunately, my first two children were girls and by the time my third, a son, was born, tests had advanced enough to prove I wasn't a carrier. I still took him to hospital to have him tested, though. If the percentage of having a boy with MD had been very high, I would have had an abortion. If I was a carrier, there was a 50 per cent chance my son would have MD. The idea of having an abortion didn't feel like a terrible thing, but rather a very practical solution to protect myself, my husband and any future children.

No

Cath Stone, 52, from Manchester, is full-time carer to her daughter Helaina, 15, who has Costello Syndrome, a rare genetic disorder. Cath's husband, Colin, also 52, set up a parent support group called www.costellokids.com to highlight the disorder and bring families together.

We'd tried for eight years to have a baby so I was delighted when I finally got pregnant. At the 16-week scan, it was noted that the foetus had a huge head. When I found out it was a girl, I named her Helaina. At 28 weeks, the hospital offered us an abortion. I talked it over with Colin and we were of the same mind. How could I get rid of a baby I'd wanted so badly. After 28 weeks growing inside me, I felt it would be murder.

At 38 weeks, I had a Caesarean. A team of doctors stood by because they didn't know if she'd be breathing or dead. In fact, Helaina came out crying, looked perfect and latched on to my breast straight away. But later that day, she wouldn't take any milk, couldn't suck and was sick. She spent six weeks in the special care baby unit. At three months, Helaina was diagnosed with Costello Syndrome. It's a cruel and life-limiting syndrome. Helaina was only the 23rd case in the world, now there are about 300. They have distinct features, are short, suffer from heart problems, have trouble feeding and have a 17 per cent chance of getting cancer.

Helaina has survived cancer twice, had a hysterectomy, brain surgery twice and been in hospital at least 50 times - yet I can't imagine life without her. She does cheerleading, venture scouts, drama, was an extra in Hollyoaks and a Child of Courage winner in 2007. Without Helaina, there wouldn't be a support group. She's an ambassador for our family as well as Costello Syndrome. The joy she gives us is immense. Before Helaina, we were a normal couple, now we have a purpose: to help others and pave the way for advances in information about the syndrome.

I believe that if a baby isn't meant to be, it will abort itself. We couldn't discard the pregnancy because it had a 'defect' in the hope of perfection next time. For us, it's a case of where do you draw the line? Once you take the first step of aborting a baby because of a disability, it's just a small step to accepting it's OK to terminate the less disabled child. That wasn't for us, and I'm glad for that every day.

Would you abort a baby if you discovered it had a disability? (CLOSED)

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