Langley mother supports petition calling for fair treatment of Downs Syndrome people in organ donations

Over half of people born with Down’s Syndrome suffer from heart problems due to their disability, yet many campaign groups say that they are often passed over for organ donations, as doctors believe they lack the capacity to make informed medical decisions about themselves, or to stick to the strict regimen of drugs needed to prevent organ rejection.

Amelia Ray-Pierce, nine months, of Scholars Walk, Langley, was born with Down’s Syndrome and a small hole in her heart. Her mother, Kirsty MacCuish, 28, said: “As she gets older surgery would be something we would be facing.

“To know I could possibly be told, if anything was to go wrong and she needed a transplant, that they wouldn’t give her one makes me feel extremely upset. I have had other mums tell me this has happened to them right before their child’s open heart surgery.”

One campaign group, the Down’s Heart Group, noted that transplantation was a treatment rather than a cure. The group said: “Life expectancy after heart transplantation is unpredictable, but may range from five to 10 years.”

Ms MacCuish said: “I think the system could be changed in a very simple way. Look at each case individually; just like you would if you were assessing someone to have a transplant who didn’t have a disability.

“Treating people with less value because they have a disability is not in keeping with this day and age. It belongs in the day when those with disabilities would be kept hidden away in institutions with no rights.”

John Forsyth, associate medical director for NHS Blood and Transplant said: “Every patient is assessed on an individual basis in terms of prognostic and quality of life benefits from transplantation. Transplant teams work closely with families and carers so that patients with disabilities can both give informed consent and follow post-transplant care plans.”

You can sign the petition at: https://petition.parliament.uk/petitions/212551