Organ retention scandal revived couple's anger and grief over baby

Paul Prince remembers it was precisely 27 minutes after the birth of his baby daughter, Chloe, when he was told she had died

Paul Prince remembers it was precisely 27 minutes after the birth of his baby daughter, Chloe, when he was told she had died. He and his wife, Lisa, have spent much of the six years since then trying to find out why their seemingly perfect baby died.

The death certificate said the cause of death was asphyxiation. Paul says they never got the answers they were looking for. By the end of last year they had tried to accept that they never would.

Paul met their solicitor who had helped them get documents and charts relating to Chloe's birth and told him they would pursue the issue no further. They thought the matter was closed.

The Princes never imagined a further trauma was about to befall them.

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One month ago two women from Altnagelvin Hospital, Derry, where Chloe was born, visited their home. They told Lisa her baby girl's brain was still in the hospital and she and her husband could now get it back for reburial. The hospital would cover any costs.

"Do you see that one word alone? Reburial. It was ringing in my head," said Paul. "Do they have any idea what they are talking about? I don't think it registers with them, the emotions involved. We have been going to that grave for six years."

After the visit from the hospital workers, Paul went to the Derry Journal. He wanted an independent public inquiry and he condemned the hospital's action.

"My initial reaction was I wanted to shame them for what they had done because they had got away with it for so long."

The couple did not take up the offer of counselling but rang the helpline number and started to arrange the reburial. They then had to face the experience of reopening their baby's grave.

"The emotions involved were unbelievable. I thought I was coping all right until the undertaker handed me a card for a wreath, and I couldn't write, my hand was shaking so much," Paul said. Before the reburial he rang the hospital to ask if they were absolutely sure only one organ had been removed.

The episode reopened the trauma of Chloe's death and the anger they felt at the time regarding the hospital's unwillingness to give them answers as to why she died.

"I didn't realise how far we had come until this happened, but this has knocked us back years. The mistrust had never gone but all the anger had subsided. But over the past three or four weeks it's all there, it's all bubbling away. This has really set us back years, I'm talking about emotionally."

Paul believes most doctors are "completely detached from people's feelings". To keep babies' organs without asking permission was "pure arrogance". He remembers being asked to sign the consent form for the autopsy. He thought it was standard procedure and believed it was necessary to determine why Chloe died.

If he had been asked to donate her organs, he would have considered it.

"We were really distressed, really stressed out. It was the worst day of our lives. But if they had sat down and just said two sentences to us and asked us: Could we do this, and you shouldn't feel compelled, you could have thought about it, and said maybe it will do some good."

Paul says he is also annoyed that the whole organ retention scandal has affected organ donations.

There are some basic questions he wants answered: why Chloe's brain was taken, who authorised it and who performed the autopsy. He was initially unhappy that the hospital was going to carry out an internal inquiry but is more reassured since the North's Health Minister, Ms Bairbre de Brun, announced a full inquiry covering all of Northern Ireland.

In a statement issued on January 25th Altnagelvin Hospital said it had retained organs from 15 babies and 45 adults from 1992 to May 2000. It expressed "deep regret" and said an experienced team had made contact with the babies' mothers and was providing support and assistance.

"Whilst all families gave written consent to the post-mortem examination, using the consent forms which were standard at that time, we acknowledge that they would not have expected organs to be retained for a prolonged period," the statement said.

Since May 2000 organs have not been retained without permission. The statement said that in the past it had been the practice "not to cause grieving families further distress by seeking explicit permission to keep organs. This is clearly no longer regarded as acceptable practice".

Yesterday a spokeswoman for Altnagelvin said a preliminary report from its own internal investigation would be put before the board of the hospital trust on March 1st.

In a statement on February 13th, Ms de Brun said a total of 376 children's organs had been retained, 361 in the Royal Victoria Hospital, Belfast, and 15 in Altnagelvin. Some 730 adult organs had also been retained, again mainly in the Royal group of hospitals in Belfast. In addition to setting up the inquiry, Ms de Brun established a Relatives Support Group.

Paul Prince is unhappy that the inquiry has 12 months to report back, saying it is an unacceptable delay. He is hopeful that they will get answers as to why the organ was taken and also more information on why Chloe died.

Only then, he says, will he, Lisa and their two little boys, David (4) and Matthew (2), be able to get on with their lives. "If I don't get answers, I know I'll be an old man with grey hair and this will still be bothering me, and it's the same with Lisa."