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.”