'She has a terrible quality of life, dominated by pain and suffering without any joy or fulfilment'

Click to follow
The Independent Online

In just 13 days, Charlotte Wyatt will celebrate her first birthday. She will spend it, like every other since she was born, at St Mary's Hospital in Portsmouth. Blind and deaf, her only movements are the spasmodicreflexes caused by her extreme cerebral palsy.

In just 13 days, Charlotte Wyatt will celebrate her first birthday. She will spend it, like every other since she was born, at St Mary's Hospital in Portsmouth. Blind and deaf, her only movements are the spasmodicreflexes caused by her extreme cerebral palsy.

She gasps for breath - a symptom of her chronic lung disease. The top half of her tiny body is encased in a plastic "sweat box" which supplies her with oxygen, and for 21 hours a day she has a feeding tube down her nose. She is given sedatives every six hours to control the pain that doctors say is her only sensation. Her brain is so small that it is off the scale used to measure development.

Yesterday, after a two-day hearing, Mr Justice Hedley ruled that if Charlotte stops breathing, as she has done three times in the past six months, doctors should not resuscitate her, but instead allow her to die.

The case will have major implications for the way in which judges decide on "right to die" cases involving extremely premature babies. Much has come down to the inexact science of measuring quality of life.

None of the experts in the case could be named, for fear of reprisals by pro-life extremists, but one doctor said: "She has a terrible quality of life, dominated by pain and suffering without any joy or fulfilment." Asked for a "best case scenario" for Charlotte's neurological functions, another said that, at most, she might occasionally smile.

But, for her parents, it is enough. When she was born on 21 October last year, Charlotte weighed 1lb and was five inches long. She was delivered by emergency Caesarean, at 26 weeks, after a shortage of blood to the placenta stopped her growing in the womb. Doctors gave her a 50-50 chance of survival.

In 2002, there were 39,290 premature births in England, of which 2,200 were at 24 to 27 weeks' gestation. But this is an area where medical science has made huge progress in recent years. In 1984, one in five babies born weighing less than 2lb survived - now it is 80 per cent.

Some babies are even surviving at 22 weeks gestation - controversial, given that the abortion limit is 24 weeks. At 23 weeks, a child now has a 17 per chance of surviving, rising to 39 per cent at 24 weeks and 50 per cent at 25 weeks.

Charlotte suffered a further setback at five months, when she stopped breathing and had to be resuscitated. Her prematurity meant that her lungs were under-developed. That damage was exacerbated by the pressure exerted by the ventilator.

A couple of months later, Charlotte again stopped breathing and had to go back on the ventilator. In July, she suffered a brain infection and stopped breathing for a third time. She was transferred to Southampton General Hospital's paediatric intensive care unit, but when she returned to Portsmouth, her condition deteriorated.

Scans showed that her brain had virtually stopped growing, and the medical team believed the episode had caused further harm to her vital organs.

Doctors decided that Charlotte had suffered enough. They asked Mr and Mrs Wyatt to consent to the decision that if Charlotte stopped breathing again she would not be resuscitated but would be made as comfortable as possible and allowed to die.

At first, the couple agreed with the doctors. But in August, they said that they wanted Charlotte to be resuscitated if she stopped breathing.

The lobby group Life and the ProLife Party declined to comment. Dr Anthony Cole, chairman of the Medical Ethics Alliance, which supports the pro-life party, said: "I do not believe that life must be preserved at any cost. There are times when it is appropriate to stop treatment."

As the debate continues in the wake of yesterday's judgment, the desperately sick little girl remains in her cot, a picture of Jesus on the wall, as her parents pray for a miracle.