A raw nerve


Finding out your dead child’s organs have been removed without permission renews the trauma of the loss, writes KIERAN FAGAN

JUST 10 years ago, parents whose children had died discovered to their horror that organs had been removed without permission, knowledge or consent, for use in medical research, and then disposed of in secret.

In some cases the pituitary glands had been extracted and sold to pharmaceutical companies to make a growth hormone for children with stunted growth.

As a case study in paternalistic authoritarian crassness on the part of doctors and health administrators, it was a classic. It was done for the best of reasons, so it must be all right.

Nobody profited personally, just the pharmaceutical companies, and society accepts they must profit to reinvest in new drugs. The child, and in some cases adult, cadavers were used, were dead, and could not suffer any further.

There are echoes here of the institutional abuse of children. Like the clerics looking after children without families, the doctors and administrators were acting out of the goodness of the heart, and further tragedies were being averted.

Nobody thought of the grieving parents. Bereaved twice, once by sickness or misfortune, then again by discovering, often long after the loss of their child, that what they had buried was the incomplete remains.

Brains and other vital organs had been removed, and replaced by sand to conceal the weight loss, before returning the body to the family for burial.

Some found that they had to go through a second funeral when the missing organs were returned to them.

Others had the trauma of knowing that their precious child’s brain had been disposed of as “clinical waste”, and thus they were “spared” a second funeral. A very cruel deception was perpetrated on people who had already suffered a cruel loss, and they were very hurt and very angry when they found out.

A campaigning group, Parents for Justice, was set up, and Karina Colgan, whose son Glen was stillborn, and whose remains were exploited without permission, has written a book, Trust Betrayed, to tell the story of that campaign.

She argues that once the truth came out, the official response made matters worse rather than better. The findings of the Dunne Inquiry were never made public, the second phase of that inquiry was abandoned, and she describes the subsequent Madden report as a “whitewash”, though the government does not agree.

Three ministers for health are criticised for not achieving full accountability and refusing to be interviewed for this book. She also criticises the HSE for withdrawing funding for the Parents for Justice group.

Colgan quotes from a letter to her from Pope Benedict XVI who, while praising the advances made in tissue and organ transplant technology, says transplants are an act of giving, and must take place only when due and informed consent has been given.

The hurt comes off the pages in the wrenching stories of parents reprising the grief of loss, often years after it had happened. These will remain with the reader when the twists and turns of how society tried to assuage the grief of the wronged families – and manifestly failed to do so – are forgotten.

- Trust Betrayed, how the organ retention scandal devastated Irish families, Karina Colgan, Poolbeg Press, 261 pp, €14.90

Some extracts from the book . . .

** Baby Jessica had a “hole in the heart”. Initially she thrived, but had a setback after six months and died at Crumlin children’s hospital.

Her parents gave permission for an autopsy. She was an only child. Later her mother contacted the hospital after hearing a radio discussion about organ retention.

“Jessica died on 17th December, 1998, aged just six months. She had brought us so much joy in her short life, and we wanted all of her back,” she said.

“It was April 1999 when eventually they asked if we wanted them to bury the remains. Clem went into the hospital to collect them and brought them home. We have to believe what they told us is true, otherwise we would never really know if the heart and lungs we buried were Jessica’s.

“It was so traumatic to have to bury Jessica for a second time. We knew it was something we could never do again. In 2007 we again wrote to the hospital and were horrified to be told that they still had 52 slides and tissue samples belonging to Jessica. It was as if history was repeating itself. We chose not to bury them, it was far too traumatic. We asked if they could guarantee that there was no more of Jessica: we were told that the only thing they could guarantee was that there was no more of Jessica in Crumlin.”

** Elizabeth was born with Down syndrome and serious heart problems, but she was a fighter and lived her short life to the full. Aged 14, her parents consented to a heart operation which initially succeeded, but her kidneys failed and she died in Crumlin children’s hospital. Her father takes up the story: “I was asked to consent to an autopsy, and gave my permission in the hope it would help others.

“As soon as the [organ retention] scandal broke, I called the hospital and we were given an appointment. I just knew in my heart that Elizabeth had been affected long before it was confirmed at the meeting ‘her organs had not been returned’.

“When we asked, we were told that they had been incinerated. We were completely devastated. [He later wrote to the Minister for Health and Children Mary Harney asking her to grant funds to Parents for Justice for its campaign to find the truth.]

“My beautiful, funny, lively, intelligent and witty daughter deserves the truth and so do we.”

** Author Karina Colgan lost her baby Glen before the organ retention scandal became known. She buried his remains twice, in 1990 and again in 2001, and other body parts were incinerated in 2001. “I felt I had failed – as a mother – to protect my son from the grotesque and undignified way his tiny body had been violated and mutilated in death. Of course, retrospectively, I knew there was nothing to be done to prevent what happened, for I was unaware of it until many years after it had taken place. However, it is a mother’s primal instinct to protect and defend her children, both inside and outside the womb.

“The pain she feels when she fails is unbearable, unrelenting, unforgiving. Eventually the raw grief passes but you never forget the pain and, of course, you never forget your baby.”