Organ donor system 'does not work', say Wealleans family

McKenzie Wealleans
Image caption Mackenzie died just before his second birthday after suffering heart problems

Everyone in Wales will be considered organ donors - unless they opt out - under new legislation that could be introduced in 2015. BBC News speaks to one family campaigning to introduce the same system in England.

For many new parents, the thought of donating their newborn child's organs is a subject they dare not broach.

But after losing two of her children to heart conditions, Shelley Wealleans, from Cumbria, now "embraces death" in the hope that other families can be spared similar heartbreak.

It meant when her daughter Madison was born on 23 July, putting her on the Organ Donor Register (ODR) was one of her first tasks.

She was three days old. At the time, believed to be UK's youngest potential donor.

For her husband Lee, 30, the reason seems obvious: "My son suffered and died because of a donor system that does not work," he told BBC News.

'Watched son die'

When Mrs Wealleans' first child, Lewis, died aged almost three months she refused to donate his organs. It was a decision the 27-year-old regretted almost immediately.

"It was only when I got home the next morning I remember how guilty I felt about saying no to them," she said.

Her refusal came to resonate seven years later in 2011 when Mrs Wealleans lost her third child, Mackenzie. A potential heart donor was never found and he was buried in Carlisle on what would have been his second birthday.

"We had to watch our little boy die," she said.

"Day after day we watched his fingers fall off. We watched his foot go black and he lost his foot. We watched his eye sockets sink, because he had lost so much weight.

"Why would you not want to prevent that, and someone else feeling that?"

It was the circumstances of losing Lewis and Mackenzie - two of her four children - that convinced Mrs Wealleans and her husband to front a local press campaign to encourage more people in Cumbria to sign up to the register.

"You have got to embrace death," said Mrs Wealleans.

"It can be a new beginning and a new chapter for somebody else. Just because someone has gone physically, doesn't mean emotionally or mentally they have to be away from you.

"You can know that you helped somebody else, by saying yes to donation."

Law change hope

While increasing voluntary registrations in Cumbria is important to the couple, their ultimate aim is a change in the law to a so-called "opt-out" system in England.

It means people will be considered donors unless they opt out of the ODR. This type of scheme, known as "presumed consent", is currently progressing through the Welsh government.

In England, consent is currently established by joining the ODR or expressing views to a family member. But if a family member of the deceased refuses, it is accepted practice to respect their wishes.

Officials in Wales believe an opt-out system could lead to an increase in donors of up to 30%. Opponents say changing the law may not make a difference and could in fact be counter-productive.

Medical opposition

The British Medical Association (BMA) called for further debate on an opt-out system in 2010 and has been campaigning for presumed consent since 1999. But this stance is questioned by some of its members.

Whilst not opposing presumed consent, BMA officer Dr Sharon Blackford last year proposed a motion urging the BMA to reconsider its stance.

Image caption The couple's son Corey and daughter Madison are both on the ODR

She believes Wales can learn from other countries, such as Spain, which she said had boosted donation statistics by increasing its number of Intensive Therapy Unit (ITU) beds and improving co-ordination between services.

"Changing the law also runs risk of losing public trust and confidence in the system and may result in a backlash unless its really fully explained and communicated to the public," she told BBC News.

But Mr and Mrs Wealleans believe that being automatically registered at birth would increase the number of organs available both for transplantation and medical research.

According to the NHS Blood and Transplant service, the Wealleans' daughter Madison was likely to be the youngest person on the ODR when she was signed up.

"Over 7,500 people in the UK of all ages are currently waiting for an organ transplant and it is touching that this new mother has made the decision to add her child to the ODR," said a spokesperson.

Opt-out 'rejected'

Although there are no current plans to change the law in England, the Department of Health said it was "studying the Welsh government's proposals carefully".

However, a spokesperson added: "It should be noted that the independent Organ Donation Taskforce examined the case for moving to an opt-out system in 2008. They recommended against it."

But the fight goes on for the Wealleans family.

"All we want is for people to think about being a donor and make that decision themselves," said Mrs Wealleans.

"We are not expecting things to change overnight, it is not going to.

"It is going to take a few years, but I hope before I leave this earth that something has changed."

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