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Friday, 26 January, 2001, 13:49 GMT
Parents tell of organ scandal hell
Kelly and Janet Valentine's daughter Kayleigh died at Alder Hey
Kelly and Janet Valentine's daughter Kayleigh died at Alder Hey
Janet and Kelly Valentine's daughter Kayleigh died after surgery at Alder Hey Hospital.

Nine years after her death, they discovered that her thymus may have been removed.

Janet Valentine tells the BBC of the family's experiences, as it was revealed that Alder Hey gave thymus glands to a pharmaceutical company without parental consent, and later received donations for the hospital.

Mrs Valentine said: "I think its absolutely appalling if they've been expecting donations for children's thymuses.

"It's all down to consent and we should have been informed about what was going on."

Kayleigh was four-and-a-half months old when she died.

Kayleigh Valentine: thymus was removed
Kayleigh Valentine: thymus was removed
Janet Valentine said: "After they brought us into the room where she was dead, we found out nine years later that they had removed all Kayleigh's organs, from her tongue to her ribs."

The Valentines had a funeral for their daughter, but later found out the hospital had retained other body parts, and later still that it had also kept the back of her brain.

The couple have just held a third funeral for Kayleigh

But Janet Valentine said she explicitly stated she did not want Kayleigh to donate any organs.

"The day she died, the nurses brought her into her room and I specifically said I did not want Kayleigh touched in any way.

"I didn't want a post-mortem, I didn't want to donate any organs. I just wanted my little girl left in peace."

She added: "Nine years later when we looked at death certificate we found out they'd actually done a post-mortem on Kayleigh and that's when we found that she'd had her organs removed. But we were drip-fed for 16 months."

Timetable of revelations

At first, Kayleigh's parents were told the hospital had retained her heart and lungs.

They then saw other lists which showed more body parts had been taken.

I didn't want a post-mortem, I didn't want to donate any organs. I just wanted my little girl left in peace.

Janet Valentine

Later still, they discovered every single organ had been kept, including Kayleigh's reproductive organs.

Mrs Valentine said: "It absolutely devastated us because every time you pick yourself up, something kept happening and would bring you down again."

They then found out a student had written a paper on low birth weight babies and had retained the back of Kayleigh's brain, which they buried at Kayleigh's third funeral just three weeks ago.

Mrs Valentine said that had been "absolutely devastating".

The couple were at Thursday's summit on organ retention, and say it did offer them some help.

Janet Valentine said: "At first we thought that it didn't sound very promising.

"We didn't think they were listening to us, it felt like we were listening to them

"But once they started to list all the horrific stories that were coming out of parents from Alder Hey, I think they were really taken back by it."

She added: "It looked like now they are going to put it forward that the law is changed and that's exactly what we want.

"I'm sure that all the parents are going to keep them to it that the law is changed and this dreadful thing never happens to any other parent.

"Because it's not just babies, it's infants, still-borns, toddlers, teenagers, and adults."

Mrs Valentine said she hoped that the authorities could learn from what happened at Alder Hey.

She added: "And that they can learn from these mistakes and that this is the end of it and all the parents can put this behind them now and look forward to the future."

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See also:

 | Health
11 Jan 01 | Health
Organ stripping law could change
11 Jan 01 | Health
Summit to discuss organ scandals
13 Nov 00 | Health
Hospital retained foetuses
03 Dec 99 | Health
Inquiry into organ scandal
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