A TEENAGER who has had a 'desperately long wait' for a lifesaving heart transplant is urging more people to consider organ donation.
Anna Hadley, 14, collapsed during a PE lesson at Nunnery Wood High School before being diagnosed with a rare heart condition.
The Worcester teen was placed on the heart transplant waiting list before undergoing a pioneering procedure weeks later to help protect her lungs.
But nearly a year on, Anna is still waiting for a new heart.
Dad Andy Hadley says she's in good spirits but the longer she remains on the waiting list the more at risk she is of a stroke or cardiac arrest.
“While adult donor registration will be boosted by the much publicised opt-out law starting in 2020, this law does not apply to under 18s and the number of child donors has not increased in the last decade,” he said.
Thirty-eight children in the UK need heart transplants, with 177 more waiting for other organs, according to NHS figures.
Mr Hadley said: “Many are critically ill and for all these children, organ transplant is the only way to save their life.
“Some are so young that they can only accept organ donations from similar-sized child donors.”
He said Anna, who has restrictive cardiomyopathy and Long QT syndrome, wants parents to discuss organ donation, share their own wishes, and agree their wishes for their children.
He said: “People have their reasons [for not signing themselves or children onto the donor register], including cultural and religious, that’s fine.
“But the problem is most people end up having to make this sort of decision at the worst time – when they’re saying goodbye to their child in hospital.
“They, understandably, want to preserve the body rather than have it harvested for organs.
“It becomes an emotional decision rather than a logical and moral one. They need to talk about it now.
“It needs a conversation, but it’s a taboo subject. Eight, nine, 10-year olds, they can make their own choices.
“They don’t see death in the same way as adults, they just want to be a hero.”
In 2017/18, a total of 17 children died while waiting for an organ donor.
On the other hand, there were 57 child donors in the same period whose donations made 200 transplants possible, compared to 55 child donors in 2013/14.
Anna’s heart can be harvested for valves and so she has signed onto the register.
An aspiring hockey player, Anna, had just been picked to play for the county before her collapse in November 2017 and until her transplant she cannot undertake any strenuous competitive sport.
“She has been generally quite well and enjoyed a symptom free period,” said Mr Hadley. “Albeit under ongoing orders of ‘no-exercise’ from her cardiologists at Great Ormond Street Hospital (GOSH) London.”
But to mark a year on the list, cardiologists have agreed for Anna to undertake a fundraising bike ride on an electric bike which will assist her on inclines.
“Not one to do anything by half, Anna now plans to cycle 212 kilometres over four days [May 24-27], the same distance from her Worcester home, to GOSH,” said her dad.
When Mike Field, the owner of OnBike Electric Bikes in the Tything, heard about the fundraiser, he offered his support by providing a new e-MTB for her to train and complete the ride.
Anthony Clarkson, director of organ donation and transplantation for NHS Blood and Transplant said: “We are in awe of Anna’s commitment to raising awareness of organ donation, and money to help others, and wish her the best of luck with her bike ride.
“It is wonderful to see her determination to keep achieving her goals and ambitions despite her desperately long wait for a transplant.”
Mr Clarkson said children in need of an urgent heart transplant will wait on average two and a half times as long as adults on the urgent waiting list.
He added: “Only 48 per cent of families supported donation for a relative aged under 18 in 2017/18, which compares to an average of 66 per cent of families agreeing overall.
“Although it can be difficult to talk about organ donation and death, especially when it is about a child, we would urge everyone to think about organ donation – both for you and your children – and share your decision with your family and friends.”
To sponsor Anna, see: justgiving.com/fundraising/cycling4gosh
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