• Case of boy with neuromuscular condition goes to high court
• Parent to submit footage to demonstrate boy's quality of life
A father whose son was born with a rare neuromuscular condition will go to the high court tomorrow in an attempt to stop a hospital withdrawing the support that keeps the child alive.
Doctors treating the one-year-old say the boy's quality of life is so poor that it would not be in his best interests to save him. They are reportedly being supported in their action by the baby's mother, who is separated from his father.
The child, known for legal reasons as Baby RB, was born with congenital myasthenic syndrome (CMS), a muscle condition that severely limits movement and the ability to breathe independently. He has been in hospital since birth.
If the hospital succeeds in its application, it will be the first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage.
Lawyers for the father say that the child's brain is not affected by the condition, arguing that he can see, hear and feel, and recognise his parents. He is also apparently able to play with toys.
The father will try to convince the court that his son has a good quality of life by submitting video footage showing the boy engaging with his parents and playing with his toys.
Neither of the parents, who have been living at dedicated family accommodation, based near the hospital, since the birth of their baby, can be named for legal reasons.
Christopher Cuddihee, a solicitor acting for the father, described the case as tragic. "The father feels very strongly that Baby RB has a quality of life that demands the trust should continue to provide life-sustaining treatment. The father clearly adores his son and hopes to demonstrate to the court that the trust's application should be rejected."
In the UK an estimated 300 people have got CMS, with varying degrees of severity. Symptoms include muscle weakness, especially in the face; people are unable to smile and suffer from double vision and drooping eyelids.
In March the parents of a baby with a rare metabolic disorder, brain damage and respiratory failure lost their legal battle to keep him alive. The high court ruled that it was in the best interests of the child, known as Baby OT, for him to be taken off a ventilator.
The doctors treating the baby said his disability was so serious and his pain so severe they should be allowed to withdraw "life-sustaining treatment".
Medical staff removed the treatment following the ruling and Baby OT, who could not breathe on his own, died.
The parents of Baby OT, who had said that the life of their "beautiful boy" was worth saving, were "deeply distressed" by the appeal judges' decision.
A spokeswoman for the British Medical Association said that while such cases were extremely upsetting, they had to be resolved through the courts. She said: "When the parents and the clinical team don't agree on the treatment for the child in question, the only way forward is to go to the courts and for the courts to decide on what is in the best interests of the child, which is paramount."
A series of high-profile cases has led the General Medical Council to develop guidance to help doctors treating critically ill newborn babies to give better support to parents faced with the decision of whether to switch off their child's life support.
A GMC poll also revealed that 80% of parents did not think the high court should have the final say over whether a baby should be kept alive or allowed to die.
In a survey of 684 correspondents with the Mumsnet website, 55% said that parents should decide, 25% said doctors should have the final authority, and only 18% wanted the courts to settle such matters. Asked whether or not it was fair to expect parents to make the final decision on whether to turn off their baby's life support, 54% said "fair" and 33% replied "unfair".
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