Quality | 2009.11.02
Court battle over child's life support
• Mother and hospital back ending baby\'s suffering
• Father argues operation would improve situation
A mother supporting a legal attempt to take her severely disabled baby boy off the ventilator that keeps him alive said today her son\'s "intolerable suffering" had to outweigh her grief at his death.
The boy, known as RB for legal reasons, was born last year with a rare condition that severely limits the ability to breathe and move limbs.
He has been in hospital since birth, where his mother and father – described as "utterly devoted parents" – have visited him every day for almost 13 months.
But the couple find themselves on opposing sides of the case being heard at the high court in London, with the hospital trust and RB\'s mother arguing the time has come to allow him a "peaceful, calm and dignified death", and his father adamant that his son has sufficient quality of life to remain alive.
Michael Mylonas, counsel for the NHS trust, told Mr Justice McFarlane it had become obvious within minutes of RB\'s birth that he had major breathing difficulties.
He said the child relied on a ventilator, adding that three different drug treatments had failed to make a difference to his condition.
As a consequence of congenital myasthenic syndrome, Mylonas said, RB could hardly move his arms or legs and lacked most of his muscle tone. He does appear to have normal brain function. Mylonas said that keeping RB alive could eventually make his existence "unbearable" as his brain developed and he realised what was happening to him.
He pointed out that the child had to undergo "suctioning" every few hours to clear liquid from his lungs, a process which involved taking him off the ventilator and causing him pain and distress. The hospital\'s application to take RB off the ventilator was "not a decision that clinicians have come to with any haste".
The view was echoed by RB\'s mother, whose solicitor released a statement on her behalf yesterday.
"[She] has sat down by her son\'s bedside every day since he was born," the statement said. "Every day she has seen the pain he experiences just to survive. In deciding to support this application, she has listened and consulted with some of the best doctors in the world. In her mind, the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child."
But RB\'s father, who like everyone involved in the case has legal anonymity, takes a different view.
He believes a simple tracheostomy operation to cut a hole in RB\'s throat and help air to get into his lungs could vastly improve the boy\'s quality of life and allow him to be cared for at home.
The prospect of such surgery was raised in court today after it emerged that one of the father\'s expert witnesses, Professor K, had suggested over the weekend that a physician, Dr B, might examine the baby with a view to a tracheostomy. Dr B is expected to visit RB this coming weekend and then give the court his opinion.
Despite the last-minute talk of surgery, however, the NHS trust insisted that a tracheostomy would not make a profound difference to RB.
Mylonas said doctors were against the idea because, even after the operation, RB would lead a "miserable, sad and pitiful existence".
He said the court would hear expert evidence about the treatment of such children, who he said were "locked in" without any means of communication.
This afternoon, one doctor described RB as being at "the extreme range of disability".
Dr David Roberts, a consultant paediatrician who has visited RB and studied video footage of his daily life, said that while he possessed "cognitive ability", it was hard to gauge his developmental progress objectively.
He said that while the boy could grasp a drumstick and use it to bang a drum held close to him, it was difficult to know whether he was hitting it because he intended to or simply because it was near his clenched fist.
Roberts also pointed out that RB had not appeared to modify his reaction when he, as a stranger, approached him. Most children of RB\'s age, he said, would react very differently to new people than to their parents.
"He didn\'t seem to show a different quality of visual interaction when I approached him or when his parents approached him," he said.
"But there\'s no doubt that he showed a different quality of bonding when he was being held or massaged by his mother."But he said on one particular occasion, RB had interacted with his parents "in a way that they described as him smiling" despite the fact that his control of his facial muscles is severely limited and he has problems opening his eyes.
Asked whether RB could cry to express pain when undergoing suctioning, Roberts said: "The occasions when he seems to form tears are associated with other movements that indicate distress.
"[When there is ] water in the eyes in the context of a procedure known to cause him distress, it\'s right to conclude that those are tears."
The case continues.
For more information, please visit
http://www.guardian.co.uk/society/2009/nov/02/parents-court-clash-over-child
