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Further grief for mother of CdLS child in organ scandal

The mother of a CdLS child who died in infancy has told of her grief and sadness since discovering that her baby was one of those affected by hospitals keeping organs without parents’ permission.

Tania Spence, whose baby Joshua Gliddon, died aged six weeks following heart surgery at Great Ormond Street Hospital in April 1995, read about the controversial hospital actions and decided to call the hospital to see if her baby had been involved.

“I just couldn’t get it out of my mind,” Tanya said. “I read that doctors at Alder Hey and Great Ormond Street had kept body parts from the babies and just needed to know if my Josh was one of them.”

The NHS had admitted that more than 100,000 body parts were being stored by UK hospitals. Tania called the hospital and spoke to a co-ordinator who had counselled Tania and her ex-husband throughout Joshua’s short life and she promised to investigate.

“I kept getting letters telling me they were continuing their investigation and I knew then that there was something wrong. Then one day they called me and said they wanted to talk to me.


“I called Joshua’s father and we went to my mother’s where I took the call from the hospital. They told me they had bad news. I expected them to say they had a kidney or something but then they said they had kept Joshua’s brain.

“I was absolutely devastated. I dropped the telephone. It was like they had told me he had died again.” Tania and her family demanded that the hospital return Joshua’s brain and last month they buried another small casket in Joshua’s grave.

“I feel relieved that we have done that,” Tania said. “But now I keep asking ‘Why?’ and nobody seems able to tell me. I have asked Great Ormond Street and so far they have not answered but it seems so wrong that they can just do this for research without asking permission.”

Writing in The Times in February during the centre of the organ scandal, Dr Jane White said: “Hospitals, including Great Ormond Street, have stores of organs that have been used for research.

“These were collected within the law as it stands, although it is now widely acknowledged that the law needs to be updated. In practice, many hospitals have already updated their procedures. At Great Ormond Street we changed our consent forms in 1992 to ask specific parental permission for hearts to be removed for research if the child died from a heart- related condition. ”


Professor Robert Anderson revealed the existence of stores of children’s organs when he gave evidence to the Bristol inquiry in September 1999. “Several such stores were started as long ago as 1940, and there are many examples of how they have increased our understanding of the causes of childhood conditions and led to better treatments.

“In the past 30 years, the study of hearts has led to better surgical techniques. Many children are alive today because of these improvements. In the early 1970s, one in five children who had heart surgery died. Now, thanks to research, between only two and three children in 100 do not survive. ”

But for Tania there is still no information about what was achieved by keeping Joshua’s brain. “I feel anti-research at the moment but I know it does good. I just want to be assured that this did too.

“At least I feel I can rest now that we have buried Joshua properly. I am so glad I made that phone call because at least I now know the truth.

“I don’t want to criticise Great Ormond Street. The staff and doctors were wonderful to Joshua and to us when Josh was in there and the co-ordinator, Mary Goodwin, has been a great friend to us. I just wish they had asked us at the time.”