Parents lose court fight to keep baby OT alive

The parents of a gravely ill baby boy failed last night in their attempt to overturn a court ruling that gave doctors the power to end his treatment and allow him to die.

Born in May last year, the nine-month-old baby suffers from a rare metabolic disease and has lived in an intensive care unit since he was three weeks old, kept alive on a ventilator.

On Thursday a judge at the High Court ruled that the baby, named only as OT, was in constant pain and gave the medical team treating him the right to stop painful invasive treatment and to take him off the ventilator, replacing that treatment with palliative care.

But Mrs Justice Parker placed a temporary stay on the order to allow the child’s parents to try to reverse the decision at the Court of Appeal.

Last night that attempt failed. Two judges — Lord Justice Ward and Lord Justice Wilson — refused them permission to challenge the ruling.

Lord Justice Ward had been told that the parents could not face hearing the decision of the court and were waiting outside. “We are not unmindful of the horror of their predicament,” he said.

The parents of baby OT do not accept that his condition is as serious as doctors have claimed and still believe that he could one day recover, go home and go to school. They want doctors to keep him alive as long as possible, so long as that does not cause him unacceptable suffering.

Lord Justice Ward asked their lawyers to pass on the message that although the hearing seeking permission to appeal had been conducted “in a brusque, uncaring, unfeeling way on a crude issue of law”, it was impossible not to feel the “deepest sympathy for their predicament”.

“One has great respect and admiration for them,” he said.

The judges said that they would give their reasons for rejecting permission to appeal at a later date. The court order allowing doctors to withdraw treatment now comes into effect immediately, though Caroline Harry Thomas, QC, for the NHS Trust involved, which cannot be identified, told the court that “there will be no unseemly rush” to withdraw treatment.

The parents of OT said that they were “devastated”. The Court of Appeal ruling follows a ten-day hearing, partly conducted at the baby’s bedside this week, which Mrs Justice Parker described as a “desperately sad and anguished case”.

The baby’s condition was deteriorating and at one stage it was thought that he would not last the week.

She rejected claims by the father that doctors and nurses treating the child had infected him to speed up his death and that they could have done more. At his bedside this week she said the father had tried to interfere with treatment and shouted: “This is murder! This is murder!” She said this outburst was a result of the terrible strain of the situation.

She accepted that the baby’s parents “love him devotedly” but said the father’s belief that he would one day go to school was “sadly, wholly unrealistic”.

She said the child was already suffering severe brain damage and that after his latest relapse, it was possible that his lungs had been damaged. The evidence suggested that he would not live more than three years: he faced a future of progressive organ failure and invasive treatment to keep him alive.

As well as granting orders to take the child off the ventilator, she gave doctors and nurses the right not to keep him alive with painful invasive treatment. One doctor said what they were doing amounted to torture.

The judge said that she accepted that “the sanctity of life is not absolute, requiring treatment that is futile”.

Dr Tony Calland, chairman of the BMA’s Medical Ethics Committee, said there was “a good deal of case law” surrounding such cases.

“Sometimes there will be an agreement between the medical team and the parents. Where that breaks down and where the medical team feel that there is undue stress being put on a child, undue pain and with no chance of a decent outcome the medical team will go to the court and ask them to determine it.”

Cruel dilemmas

— Charlotte Wyatt was born in 2003 — three months prematurely and weighing only 1 lb — with severe brain and lung damage. Her parents won a court battle to ensure that she was revived in the event of a collapse. The child survived with severe disabilities, but living in care, as her parents struggled to meet her 24-hour healthcare needs

— In 2004 Luke Winston-Jones died at the age of ten months, at Alder Hey Children’s Hospital, Liverpool. Doctors had been granted permission by the High Court to withhold life-saving treatment by “aggressive” medical ventilation. Luke had been born with Edwards syndrome, a rare genetic disorder

— In 2006 a child identified only as MB, suffering from a degenerative muscle-wasting disease, was given the right to be kept alive on a life-support machine against the wishes of his doctors

— In 2007 Mr Justice Holman ruled that a seriously ill baby girl should undergo a bone marrow transplant that would give her a 50 per cent chance of life, despite her parents’ wish to spare her further suffering.