TV: Saviour Siblings

14 February 2010

Having a Baby to Save My Child
BBC1, Tuesday 16th February, 10.35pm-11.15pm, available after broadcast via the iPlayer.

“Having A Baby To Save My Child follows two couples over two years as they take a controversial route to find cures for their critically-ill children.

Alison and Thomas, from Sheffield, and David and Samantha, from York, both have a child who needs a bone marrow donor to cure their life-threatening disease, but have found no match through the usual route of the international register.

Now, with advances in IVF techniques, it is possible to have a new baby unaffected by the disease and who will be a perfect tissue match, and therefore a donor, for their ill sibling.

For Alison and Thomas, time is running out for four-year-old David, who has Fanconi Anaemia – a degenerative disease of the bone marrow. As practising Catholics, the idea of using IVF techniques to “create” a child to cure another has created a moral dilemma.

Alison says: “We’re trying to choose a baby that’s not only a baby for us but a baby that will help David. I guess ethically there are a lot of strong opinions about whether we should or shouldn’t be having a go at doing this.”

David’s and Samantha’s 10-year-old daughter, Jessica, was diagnosed with the same disease in 2007. By the time she was 11, she urgently needed a bone marrow transplant but, with no matched donor available, they were forced to use her dad’s marrow – which was only a 50% match. A few weeks after the transplant, Jessica died.

Now the couple face losing their two-year-old son, Alex, who also suffers from the disease. The film follows them as they fight for NHS funding to pay for the treatment.

David says: “We’re not talking about ‘I want a baby with blonde hair and blue eyes’, that’s not what we are talking about. We’re talking about a child that is healthy.””


Radio: Inside the Ethics Committee – IVF, Disability and PGD

29 July 2009

BBC Radio 4, 9am (repeated 9pm) Thursday 30 July, 2009. Available to listen indefinitely after broadcast via the iPlayer.

“Series in which Joan Bakewell is joined by a panel of experts to tackle the ethics involved in a real hospital case.

They examine the case of Ayesha and her bid to receive fertility treatment. Ayesha has a genetic condition which causes muscle weakness and curvature of the spine. She is in a wheelchair and heavily reliant on her husband and others for day-to-day tasks such as getting out of bed, having a shower and going to the toilet.

By law, the welfare of any child born through fertilty treatment has to be assessed, and Ayesha’s case is no exception. But how does her disability and future health affect the welfare of a child? Is it ethical to put the needs of someone who doesn’t exist yet above those of someone who does? Should a fertility treatment request be treated any differently if one of the parents has a disability rather than a life-threatening illness like cancer? Whose job is it to decide what makes someone adequate parents?

There is a 50 per cent chance that her condition will be passed on to any future child. It is possible to screen out the condition in affected embryos. But Ayesha says she would accept any child regardless of its condition and wouldn’t want any screening. The law says you cannot screen in a disability, but says nothing about screening one out. Is it ethical to consider screening for embryos in effect with the same conditon as Ayesha’s if she was offered fertility treatment?”