Home
This situation can happen to any parent, what would you do?
From the Times:
Baby RB at risk of more painful death if cared for at home, says infant's doctor
A severely disabled baby at the centre of a life or death battle between his parents would be at risk of a more painful death if his father was to have him cared for at home, the boy’s doctor told the High Court yesterday.
Doctors, supported by the mother, want to withdraw life support from the one-year-old boy, known as Baby RB, who cannot breathe unaided. But the father, who is separated from the mother, opposes the move.
Footage compiled by Baby RB’s father and played in court showed the boy reacting to a doll, tugging on a balloon string and pulling his mother’s hair, Martin Westgate, representing the father, said.
But Dr F, the consultant in charge of the boy’s care, said that the footage was not evidence of deliberate movement.
Related Links
“I don’t think you can read that into them,” he said. “It is very difficult to know whether they are deliberate volitional movements”.
Dr F said that the objects were always held near RB’s hand.
Mr Westgate said: “He showed enjoyment, play, in exactly the same way on three occasions.”
The doctor replied: “What I saw was the movements I have seen on a regular basis and the mother’s head near his hand. I don’t think that what we saw in the DVD was clear evidence of purpositive movement.”
Dr F agreed with Mr Justice McFarlane that if Baby RB were capable of deliberate motions, it would make a difference to his quality of life. But he said: “For me this is about the physical, breath-by-breath dependence on a ventilator, and my heartfelt feeling is that his existence is impoverished.”
Baby RB suffers from congenital myasthenic syndrome, a rare neuromuscular condition, with no hope of recovery. Baby RB is “completely dependent on getting a breath [from a ventilator] every three seconds. He is on a knife edge,” Dr F said. “I think that must be a terrifying existence when you are not able to cope with a breath delivered a second later than you are used to.”
RB’s mother and father, described by Dr F as “very, very dedicated” have spent ten hours a day at his bedside.
The father believes that a tracheostomy, which creates an opening in the neck to allow air to the lungs, would allow Baby RB to return home. The boy will be examined by another physician on Saturday.
However, Dr F said that he was “not a candidate” for a tracheostomy and would still be reliant on a ventilator, and doctors believe that RB should die a “dignified death”, planned with palliative care. Also, the danger of home care with a tracheostomy, Dr F said, was that a blockage or infection could lead to a more distressing death.
He said that RB was “at the most severe end of physical disability of all the children I have looked at” during his time working in paediatric intensive care.
“To exist in this world you need to have a few basic fundamentals. You need to be able to cough, you need to have a gag reflex, to be able to breathe, to respond to painful stimuli, and in my view he hasn’t demonstrated any of these,” he said.
“It troubles me that I am committing him to daily ventilation in an intensive care unit when his existence is distressing and when he doesn’t have these basic building blocks to live in the outside world.”
For legal reasons the boy, his parents, the hospital trust and medical staff treating him cannot be named.
The hearing continues.
http://www.timesonline.co.uk/tol/news/uk/article6902057.ece
It must be the hardest decision in the world for a parent, and I agree with the mother on this one.
From the Times:
Baby RB at risk of more painful death if cared for at home, says infant's doctor
A severely disabled baby at the centre of a life or death battle between his parents would be at risk of a more painful death if his father was to have him cared for at home, the boy’s doctor told the High Court yesterday.
Doctors, supported by the mother, want to withdraw life support from the one-year-old boy, known as Baby RB, who cannot breathe unaided. But the father, who is separated from the mother, opposes the move.
Footage compiled by Baby RB’s father and played in court showed the boy reacting to a doll, tugging on a balloon string and pulling his mother’s hair, Martin Westgate, representing the father, said.
But Dr F, the consultant in charge of the boy’s care, said that the footage was not evidence of deliberate movement.
Related Links
“I don’t think you can read that into them,” he said. “It is very difficult to know whether they are deliberate volitional movements”.
Dr F said that the objects were always held near RB’s hand.
Mr Westgate said: “He showed enjoyment, play, in exactly the same way on three occasions.”
The doctor replied: “What I saw was the movements I have seen on a regular basis and the mother’s head near his hand. I don’t think that what we saw in the DVD was clear evidence of purpositive movement.”
Dr F agreed with Mr Justice McFarlane that if Baby RB were capable of deliberate motions, it would make a difference to his quality of life. But he said: “For me this is about the physical, breath-by-breath dependence on a ventilator, and my heartfelt feeling is that his existence is impoverished.”
Baby RB suffers from congenital myasthenic syndrome, a rare neuromuscular condition, with no hope of recovery. Baby RB is “completely dependent on getting a breath [from a ventilator] every three seconds. He is on a knife edge,” Dr F said. “I think that must be a terrifying existence when you are not able to cope with a breath delivered a second later than you are used to.”
RB’s mother and father, described by Dr F as “very, very dedicated” have spent ten hours a day at his bedside.
The father believes that a tracheostomy, which creates an opening in the neck to allow air to the lungs, would allow Baby RB to return home. The boy will be examined by another physician on Saturday.
However, Dr F said that he was “not a candidate” for a tracheostomy and would still be reliant on a ventilator, and doctors believe that RB should die a “dignified death”, planned with palliative care. Also, the danger of home care with a tracheostomy, Dr F said, was that a blockage or infection could lead to a more distressing death.
He said that RB was “at the most severe end of physical disability of all the children I have looked at” during his time working in paediatric intensive care.
“To exist in this world you need to have a few basic fundamentals. You need to be able to cough, you need to have a gag reflex, to be able to breathe, to respond to painful stimuli, and in my view he hasn’t demonstrated any of these,” he said.
“It troubles me that I am committing him to daily ventilation in an intensive care unit when his existence is distressing and when he doesn’t have these basic building blocks to live in the outside world.”
For legal reasons the boy, his parents, the hospital trust and medical staff treating him cannot be named.
The hearing continues.
http://www.timesonline.co.uk/tol/news/uk/article6902057.ece
It must be the hardest decision in the world for a parent, and I agree with the mother on this one.
