The pain of learning your child was buried without his heart

The public inquiry into the Bristol heart scandal opened yesterday, but its outcome will not help Chris and Daphne Ford make a distressing decision over their son's burial. By Louise Jury

CHRIS AND Daphne Ford face the same agonising dilemma that dozens of other families are now having to confront.

In Great Ormond Street Hospital, London, lies the heart of their son, Peter, who died after surgery at the age of two weeks. When they buried him, in the quiet churchyard of their Surrey village, they did not realise that his heart had been removed and retained for tests.

The discovery in 1992, six years after Peter died, that he had been buried without his heart, was a shock. When he heard the news Chris physically crumpled, unable to believe it. Daphne began suffering nightmares which continue to this day. They have since had another son, Jason, now aged 11.

Since they learned the truth, they have agonised about what to do. Do they exhume Peter's body to re-bury him "whole"? Do they wait until one of them dies and place the heart in their own coffin? Do they leave it at hospital? Six years on, they still have not decided.

The Fords were acutely reminded of the problem earlier this month when the Bristol Royal Infirmary announced it was contacting up to 180 families whose children underwent unsuccessful heart surgery and died. The hospital revealed it had retained the babies' hearts without the families' knowledge or consent, to carry out further tests and for research. The practice, it has emerged, is widespread in the NHS.

When news of the Bristol scandal broke, the Fords were dragged back into their family tragedy. "I was hysterical," Daphne says. "I just wept and wept and wept."

If Daphne, now 49, had not become a counsellor to other couples who have lost a child, they may never have discovered what had happened.

"I had become a bereavement befriender of people who had lost babies and children," she says. "One woman said she had been helped by having all the medical details, that they had helped her feel complete as a parent."

After hearing this, Daphne and Chris decided to contact Great Ormond Street themselves. They were told that not only Peter's heart but his brain, liver and kidneys had been removed and not replaced for the funeral. A nurse told them that to remove the brain, the top of his head would have been sliced off "like a boiled egg".

"My husband actually collapsed on the floor. He couldn't move, he was absolutely horrified," Daphne recalls. "We had buried Peter in our local village churchyard and suddenly everything we thought had happened wasn't true. We were extremely distressed to think of Peter's body being in London and not in the churchyard."

Eventually the couple were told it was not all the organs, but only the heart. "But we had been put through the emotional mill. We were never asked if we minded that they kept it." It transpired that the heart had been retained for tests on the muscle tissue because it did not beat properly after the operation. ["I cannot put the trauma into words," Daphne says.]

Today, Chris, 45, a sales manager, and Daphne, who runs parenting skills courses, are relieved that the practice of retaining organs for research is coming out into the open. "I'm not against them keeping organs for surgery if the parents wish them to be used. But I don't feel they have a right."

The Fords now think that if they had been asked, they would have delayed the burial until the tests were complete and then restored the heart to their baby. "It felt to me as if it was stolen," said Daphne. "For it to be taken and used without our knowledge was immoral.

"The NHS should consider the whole situation in a comp-assionate way. I can't bear to think of other people going through what we have."

The Fords are still facing their dilemma. "While we'll always have our memories of him, it should all be behind us," Daphne says. "But it's not, because we're left with this problem that we don't know what to do about."

Meanwhile, in a churchyard near Farnham, their baby son lies without his heart.