Paula O'Leary: A mother's love transformed by grief and anger

In 1981, the O'Learys buried baby Andrew. In 1999, another funeral was held for the organs retained at Alder Hey hospital. This Friday, the last of the child body parts from the scandal will finally be interred. Nina Lakhani meets Paula O'Leary

Paula O'Leary lives a waking nightmare. "It never stops, not for a day." Her grief comes at you and sinks its teeth in, wild and implacable, within minutes of meeting her. Eleven years after she first discovered that her baby boy's organs had been illegally harvested by Alder Hey Hospital, she is nowhere near coming to terms with what happened.

Her grief is furious, passionate and heart-breaking all at the same time. It has seared into her soul. It has kept her going, alive even, in many ways. But it has also, she knows, stopped her from living. The 51-year-old is hospitable, welcoming me into her comfortable home in Bootle, Merseyside, but the outpouring of so much sorrow as she remembers some of the horrors surrounding baby Andrew's life and death is at times difficult to bear. For both of us.

In September 1999, 18 years after Andrew died at the age of 11 months, Mrs O'Leary picked up a newspaper while sitting in a dentist's waiting room and read about the "Bristol babies" inquiry into how 24 babies were buried without their hearts.

After several days, unable to forget what she'd read, Mrs O'Leary rang the hospital switchboard, not sure who she needed to talk to about her own dead babies (Andrew's twin sister, Stephanie, had also died at Alder Hey at four days old).

"After I read about those poor women, those babies, I couldn't shake the feeling off. When I rang, as soon as I said my babies died 18 years ago, well, it was obvious they were waiting for this bombshell to hit them. It happened to be me, but they knew it was coming."

Within days Mrs O'Leary was told that Andrew's heart had been removed, without her permission, for research purposes, but had not been used. She staged a five-day sit-in at the Liverpool hospital and took calls from Jack Straw, the then Home Secretary, until it was handed over. Her son was buried for a second time, carried in a tiny coffin by his three brothers, then aged 21, 16 and nine. The sight was a shattering one, unsettling her deeply.

Three months later, in January 2000, Mrs O'Leary ran through the streets of Liverpool in pouring rain, clutching a Sainsbury's bag containing 36 different, preserved parts of Andrew's body. She had gone to collect pathology reports, or so she thought, from the solicitors acting for Alder Hey. She was confronted instead with a cardboard box full of his body parts: two tiny kidneys; his tongue; spleen and gall bladder, each set into wax blocks. Until then, the hospital had repeatedly denied that any other organs had been taken from Andrew.

"They'd sworn to me, but it was all lies, blatant lies, constant lies about everything. They'd stolen him, let me bury him incomplete, and then lied about it. It's bad enough to bury a child but to do it twice, three times, you can't imagine how that feels. From the moment I saw exercise books with pages of names – of babies who had been left incomplete – my life was dedicated to finding out what happened and helping other parents.

"I'm not the brainiest of people but I'm not stupid either; and, for your children, well, you'll fight anyone, tooth and nail, for what you believe is right. And I wanted to make their lives hell for what they'd done."

In a spiral of grief, while enduring an inquest which identified the cause of Andrew's death as a brain haemorrhage – not cot death or Sudden Infant Death Syndrome as thought previously – she co-founded the support group Pity II (Parents Interring Their Young for the second time) and started to tell the world what had happened to her child.

An inquiry was launched and more than 100,000 organs, body parts, entire foetuses and stillborn babies were discovered in 210 NHS facilities. Alder Hey, a highly respected children's hospital, was among the worst offenders. It eventually agreed a £5m out-of-court settlement, a sum equivalent to £5,000 for each child. Mrs O'Leary turned it down flat: "My child was never for sale."

While the Dutch pathologist Professor Dick van Velzen, responsible for removing hundreds of organs at Alder Hey between 1988 and 1995, became synonymous with the scandal, the practice dated back to the 1940s. It was Dr van Velzen's predecessor, Dr Jean-Marie Bouton, who harvested Andrew's organs and those of hundreds of others for research over the course of 22 years. Most were never used. In Andrew's case, his brain was apparently given to a Turkish PhD student as a "donation". Mrs O'Leary confronted Dr Bouton in his own home after tracking him down in 2001 when he denied any involvement. She was arrested.

Unlike some of the affected families, she simply could not endure a third burial for Andrew, so she keeps his remains at home, safe. The plan is to bury them alongside herself or her husband, Thomas.

Even as she says this, she is close to tears again. She is never far from breaking down. For the past 10 years she has been heavily medicated: anti-depressants, sleeping pills and handfuls of Valium to keep away the horrors she sees in flashback. On bad days, she pictures a mortuary full of doctors, pathologists and hospital managers, standing round Andrew's tiny body, shouting out which organs they want, tearing at him like wolves. The torment of these visions hasn't left her despite years of counselling and psychotherapy.

For some, the final chapter in their personal horror story will end next Friday when the last unclaimed body parts belonging to babies caught up in the scandal will be buried. Mrs O'Leary will be there. Burial services for these orphaned, unclaimed remains have been taking place weekly since last May. There will be a memorial service next month and the dedication of a memorial garden.

Paula O'Leary has achieved remarkable things in the teeth of bureaucratic indifference and political resistance: changes in legislation, the sacking of some of the staff responsible and the burials. But none of these has given her peace of mind or closure. It seems nothing ever will.

She has helped hundreds of families through Pity but no longer sees any of them. "I can understand it," she says. "They've moved on and I can't. I miss them, though. I miss having that focus Pity gave me every day." Did it make her feel better? "No, not really; nothing does. Except my grandchildren: they saved my life."

She has four granddaughters; the youngest, Sophie, is just five weeks old. She looks after Olivia, 2, and Connie, 20 months, every day. Caring for them keeps her sane; forces and enables her to get out of bed even when she cannot bear to.

She has been married to Thomas, an oil rig worker, for 32 years, but has known him since she was two years old. They grew up a few doors apart, not far from where they live now. Their marriage and the family have survived, grown stronger. Andrew's memory, and Mrs O'Leary's grief, remains very much a part of that. "We talk about him every day. I still talk to him all day.

"And I never miss the cemetery: I'm there every Sunday, more often during the summer. I take Kimberly, my eldest granddaughter, with me sometimes and she talks about him, too. This is how I've kept going, but it has not been easy for my family."

Her youngest child, Danny, 20, comes in from work to get his football kit. Mrs O'Leary wells-up: "I feel so guilty because our Danny was just a nine-year-old little boy when I found out about Andrew and the next time I looked he was more or less a man. I missed all that; I neglected him. I couldn't get out of bed for days and, when I did, I'd be flying off to meet other parents. I couldn't stop. And then I had a nervous breakdown. That cuts me to pieces; they stole that from me as well."

Danny, a barber, seems fine. He has just signed up for the Marines, although his mum doesn't want him to go.

In the meantime, she remains on her own personal battlefield: fighting to keep the issue in the public eye. She hasn't forgotten a single detail. Not a date, not a word, not a fact. It is as if it happened yesterday. She is consumed by the fear that, if she stops, the world might forget what happened to Andrew, and then it could happen again. Not today, not in her lifetime, but one day. So she can't stop – she won't stop – talking about it.

The organs scandal

1988 Dutch pathologist Professor Dick van Velzen is appointed chair of foetal and infant pathology at Alder Hey children's hospital in Liverpool. He begins to retain organs and falsify records and post-mortem reports.

1992 Helen Rickard's baby, Samantha, dies during open-heart surgery at Bristol Royal Infirmary (BRI).

1995 Van Velzen leaves Alder Hey to work in Halifax, Nova Scotia.

1996 Helen Rickard demands a copy of Samantha's medical records from the BRI and finds a letter stating her heart had been retained.

1998 Van Velzen is fired from Nova Scotia hospital.

1999 Bristol Heart Children Action Group members call a press conference to inform the public about the retained hearts. A medical witness at the inquiry draws attention to the large number of hearts held at the Alder Hey Hospital, which results in an official investigation.

2000 A worker at a storage facility in Nova Scotia finds the organs of an eight-year-old girl in a plastic bag.

2001 The General Medical Council rules that Van Velzen should be temporarily banned from practising medicine in the UK.

2003 Alder Hey families accept an out-of-court settlement of £5m.

2004 The Crown Prosecution Service decides Van Velzen should not face criminal charges.

2005 Van Velzen is banned from practising medicine permanently in the UK.

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