A couple who went to the Appeal Court in a desperate attempt to save their seriously ill child were forced to rely on the second opinion of a doctor who, The Mail on Sunday has learned, did not examine the child.
The nine-month-old baby boy, known only as OT, died yesterday morning shortly after 10am after doctors began withdrawing medication.
He suffered from mitochondrial disease, a rare metabolic disorder in which the body can't deliver energy properly.
As a result he was severely brain damaged and had lived in an intensive care unit since he was three weeks old, kept alive on a ventilator.
Right to life: Charlotte Wyatt in hospital at the age of 16 months with her parents Darren and Debbie, who feel for the family of baby OT
The hospital's medical team had applied to the courts to end the boy's treatment and allow him to die.
Last Thursday a judge at the High Court ruled that baby OT was in constant pain and gave the medical team treating him the right to take him off the ventilator. On Friday the Court of Appeal refused his parents permission to challenge the ruling.
But the parents who saw 80 solicitors before they found one who was prepared to accept their case do not think they were given given ample opportunity to put their arguments across.
Neither do they accept that their son's condition was as serious as doctors have claimed.
For legal reasons, neither the name of the baby, the parents, known as Mr and Mrs T, nor the hospital where the baby was cared for, can be named.
The Mail on Sunday has, however, been told that the parents are devout Muslims and the father is a refugee from Afghanistan who has been in the UK for ten years.
Yesterday the parents issued a statement which read: 'During his short life with us, OT became the focus of our lives. We were present during his last moments, together with OT's extended family. He died peacefully. We will miss him greatly and wish to say that we are proud to have known our beautiful son for his brief life.'
It is the tragic culmination of nearly a year of inconceivable suffering, not only for the child, but also for his devoted parents.
Ruling law: A judge at the High Court gave the medical team treating baby OT the right to take him off the ventilator, a decision upheld by the Court of Appeal
Last December doctors decided that the child had no chance of recovery and told his parents they felt treatment should be stopped and that the life-support machines that were keeping him alive should be switched off.
They said he was in unbearable pain and one doctor commented that keeping him alive amounted to 'torture'.
His parents disagreed. Last night the couple's barrister, Nicholas Bowen, of Doughty Street Chambers, told The Mail on Sunday: 'They believe and will always believe he was much more capable than the doctors thought.
'They also felt that, with time, his disability may not have been as profound as the doctors believed. They were encouraged by stories of other families, Charlotte Wyatt being one of them...a baby who was expected to die and didn't. There are numerous issues with regards to the doctors that do still worry the family, which have been disposed of by the High Court.
'The key clash was not about life expectancy; they obviously saw the writing on the wall but they felt their son's life was worthwhile. As far as they were concerned, even though he was gravely disabled, he was able to experience pleasure and he was aware of his parents' presence. They were absolutely convinced he reacted to their voices, that he cooed when his father went closer and relaxed him and comforted him, and when he was unhappy he made a completely different type of noise.'
It is normal when there is conflict between what the parents want and what the doctors think is best, for the NHS trust involved to take the matter to court and let the judges decide.
But the parents were shocked and disappointed when the hospital resorted to this course of action. In a statement they said: 'They (the doctors) think his life is intolerable and that his disability is such that his life has little purpose: but we, along with some of the nurses, believed that he experiences pleasure and that he has long periods where he was relaxed and pain free. Our belief in his humanity and inherent worth justified us taking every step to support him.'
Nicholas Bowen explained: 'He suffered from a rare metabolic disorder, mitochondrial disease. The body has a dysfunction which means that it can't deliver energy so those particular parts of the body that require large amounts of energy, like the brain, suffer.
'He was a normal happy little chap until he was three weeks old when he became very sleepy and lethargic. He was a full term, normal child, then everything changed.'
Ruling: Justice Parker ruled that baby OT should be allowed to die
As is usual, the doctors informed the parents that they were within their legal rights to get a second medical opinion.
For Mr and Mrs T this was neither straight-forward nor easy.
A source said: 'The baby's father had no idea of the best way to do this, but immediately began scouring hospitals in a desperate search to find a specialist that would help him keep his son alive.
'The hospital doctors looking after the child were unable to advise o help him in this traumatic task. Weeks passed and he became more desperate as his son's condition deteriorated. Eventually he found one doctor who agreed to help, but according to people close to the couple, he did not actually medically examine the child.'
The child's father also had to find a lawyer. The Mail on Sunday has been told that the distraught man knocked on the doors of 80 legal practices begging for assistance, but was constantly turned down by lawyers as legal aid funding was not available.
One legal expert described the situation as 'a scandal.' He said: 'Legal aid has been so severely cut that many firms refuse to take cases on. Because legal aid is no longer freely and properly available there are far fewer people able to help needy, humble and ordinary couples like Mr and Mrs T. It has to be seen as part of their tragedy.'
Eventually one lawyer agreed to help. Meanwhile the NHS trust continued with their own preparations. The case was finally heard by Mrs Justice Parker.
In 2000 she had represented the conjoined twin Jodie. The twins' devout Catholic parents had opposed separation on the grounds that her weaker sister, Mary, would not survive. In that case the Appeal Court ruled that although Mary would die it was a legal operation as Jodie had a right to self-defence.
The Baby OT hearing took ten days and was held at the hospital so that the parents could spend as much time as possible with their son. His condition was deteriorating so fast it was thought at one point that he would not last the week. The judge rejected claims by the father that doctors and nurses had infected the child to speed up his death and that they could have done more.
The judge said the father had tried to interfere with treatment and he had shouted, 'This is murder! This is murder!' She said this outburst was a result of the terrible strain. In an extraordinary break with convention, the doctor acting for Mr and Mrs T was not called to give evidence. An insider commented: 'His report was not at all helpful and seemed to side with the hospital. Nor was it clear that he had actually seen the child.'
Mrs Justice Parker ruled that it was in the best interests of the baby to withdraw 'life-sustaining treatment'. She rejected claims by his parents that his life must be preserved at all costs and to stop treatment would be a breach of his 'right to life'.
She said: 'OT is a unique human being. His life is valuable. But OT does not have the right to be kept alive in all circumstances. OT has the right to life. OT does not have the right to be kept alive.'
She did, however, give the parents the right of appeal. In a hastily convened appeal hearing on Friday, lasting less than four hours, two judges, Lord Justice Ward and Lord Justice Wilson considered the technical point of whether OT's parents had had enough opportunity to gather their evidence.
In the event, the judges refused permission to challenge Mrs Justice Parker's decision. As the parents could not face hearing the court's decision, Lord Justice Ward asked their lawyers to pass on the message that although the hearing 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 ethical expert said last night: 'I do not believe that the original judge acted unfairly. It was inevitable that the child would die, as events have demonstrated.'
Nicholas Bowen said: 'The basis of the appeal was that the hospital came to the court in such a rush that the parents' case was seriously compromised. The parents are obviously devastated. They are desperately, desperately, upset but they entirely accept the law has taken its course.
'There has been difficulty and friction with the relationship with the doctors but they appreciate everything they did for baby OT. They understand he wouldn't have lived but for medical intervention and that the NHS has done an extraordinary job. They're just tragically sorry that they couldn't sort out a way forwards which would have involved his survival.'
Anthony Kirk QC former Chairman of the Family Law Bar Association says: 'This was an extremely anxious case for Mrs Justice Parker to decide. She is a newly appointed judge but absolutely brilliant. In a way it is a question of playing God.'
I'm so happy we defied 'experts' to save our little girl
Improving every day: Charlotte Wyatt is now five years old
The father of a severely disabled girl who won the right to keep her alive said yesterday that his heart went out to the parents of the nine-month-old boy allowed to die by medical staff.
Darren Wyatt took his fight to keep his baby daughter Charlotte alive to the High Court and won.
She is now five years old and he says her condition improves every day completely vindicating his efforts to protect her.
He said: 'She has a lovely smile, she can hear, she is alert and she gets better all the time.
'The doctors told me Charlotte had only a one per cent chance of surviving and getting better, but I knew they were wrong. She is now five and every time I see her I am just so pleased I went to court against all the wishes of the medical profession.
'Her sight is improving with the help of the glasses she wears and she goes to a special school several days a week. She gives every impression of being a very happy, lovely little girl.'
Charlotte spent the first three years of her life at St Mary's Hospital, Portsmouth, where doctors applied to the High Court for permission not to resuscitate her in a life-threatening situation. She was born three months prematurely, weighing just 1lb, in October 2003 and suffered serious brain, lung and kidney damage.
Medical staff treating her said she was in constant pain and insisted that she had no prospect of developing normally or living an independent life.
Darren and Charlotte's mother Debbie successfully challenged the doctors' court application, and were adamant that they could see improvements in her condition, arguing that no one could predict the extent to which she might make progress.
The couple split up two years ago, and Darren now lives in Portsmouth while Debbie has moved back to her native Birmingham. When Charlotte was released from hospital, she was placed with foster parents and Darren sees her once a month.
He said: 'I see her with social workers and it is the best day of the month for me. She beams when she sees me and I can't keep the smile off my face either.
'She is living with foster parents and gets all the medical aid she needs and is thriving. When I heard the news of this baby boy being allowed to die, I felt awful. My heart really goes out to the parents of this little lad because who knows what he could have achieved if he had been allowed to survive.'
Darren, who has five other children from a previous marriage, added: 'I think it's wrong that doctors have the right to make this decision because they cannot know how a child, even one who is severely disabled, will improve under the right conditions.
'The medical staff in Portsmouth had written Charlotte off completely and said she had no chance of any quality of life and would be better off simply fading away and dying.
'If you saw her today you would know what a dreadful decision that would have been. Doctors cannot see the fighting spirit that someone like my little Charlotte has.'
He said Charlotte still needs a little oxygen every day, but she loves to listen to nursery rhymes and can now stand and walk with the help of a walking frame. 'Going through the courts to keep Charlotte alive totally drained me,' said Darren. 'But now, when I look at her smiling face, I know it was the best thing I ever did.'
The Mail On Sunday, 22nd March 2009