JONNY KENNEDY lived and died in agony. From the moment he was born until his premature death at the age of 36 he was covered with blisters and sores, the result of a rare genetic skin condition called epidermolysis bullosa (EB). The mildest touch caused his skin to bleed and sheer off.

When he died of skin cancer on September 26, 2003, his mother Edna, who lives in Newcastle upon Tyne, admitted that her primary reaction to his death was relief, not grief.

In the Netherlands doctors are permitted to carry out mercy killings of babies born with disabilities including severe forms of EB and spina bifida. Now a professional medical body in Britain says that society should consider “active euthanasia” here for the sickest babies.

Kennedy says she is instinctively opposed to euthanasia but after almost four decades of caring for Jonny, she believes it should be an option in some circumstances.

“Jonny actually contemplated suicide at the age of 18, unbeknown to me. But, as a mother, it was much more difficult. I remember the doctor said, ‘Just leave him at the hospital, forget about him’. But I couldn’t have done that — it wouldn’t have been in my nature. He was my responsibility. I had to deal with him,” Kennedy said.

“I never thought about euthanasia, but it did cross my husband’s mind. He offered when Jonny was little to put a pillow to his head and end the suffering. I couldn’t condone it.

“But knowing what I know now, I couldn’t in all conscience bring a child into the world who was going to suffer like that. In extremely controlled circumstances, where the baby is really suffering, it should be an option for the mother.”

Five years ago Dr Pieter Sauer, now head of paediatrics at the University Medical Centre Groningen in the Netherlands, agreed to the mercy killing of a baby boy born at the hospital with EB. The infant was in constant pain but, because his skin was so tender, his parents could not touch or lift him to offer comfort because even the most gentle contact increased the agony. They could only watch helplessly as their baby, covered from head to toe in layers of bandages, suffered. They appealed to Sauer for help and the child died at three months old.

Sauer insists the killing offered relief to the infant, his parents and hospital staff. “The parents came to me and said, ‘Please help us because this is suffering without any purpose. In no way is this in the interests of this child’,” he said.

Every day in hospitals across Britain doctors and parents are faced with fraught decisions about how far they should go to keep alive severely disabled babies. At the moment medics can offer high-tech intensive care or, if everyone agrees that it is pointless to give the infant invasive treatment that would be unlikely to succeed, the baby is fed and kept warm but allowed to pass away in their own time.

While raising the issue of euthanasia of newborns, the Royal College of Obstetricians and Gynaecologists has stopped short of specifying the level of disability which would justify it.

However, the case of Charlotte Wyatt, the severely handicapped infant whose parents fought a series of lengthy court battles to stop doctors letting her die, crystallises many of the dilemmas.

Portsmouth Hospitals NHS Trust, which runs St Mary’s hospital where Charlotte is a patient, won a High Court ruling, against her parents’ wishes, to allow doctors not to resuscitate her. Doctors told the court that ventilating Charlotte, who was born at 26 weeks, would be “purposeless and intolerable to her”. They also said that Charlotte was in constant pain and would be unable to have any quality of life (although an independent medical report later disputed this), and that she was unlikely to make it through the winter of 2004.

Charlotte has defied the predictions and, at the age of three, is well enough to leave hospital. However, the burden of caring for her played a part in the break-up of her parents’ marriage and she will not be able to leave hospital until a foster family is found for her.

Advanced medical treatment means that babies born after only 23 weeks can be saved but doctors point out that many live with severe disabilities, creating a lifelong burden for their parents and considerable costs to the taxpayer. A study, EPICure, led by researchers at Nottingham University, found that by the age of six, only 20% had no disabilities.

The cost of treating very premature babies is high. A neonatal intensive care bed costs about £1,000 a day and exctremely premature babies can require intensive care for four months.

Read the RCOG's full submission here

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