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Legal Showdown Continues Between Doctors And Parents Of 17-Month-Old Boy
By Dave Reynolds, Inclusion Daily Express
March 10, 2006

LONDON, ENGLAND--The showdown continued this week in a British court between parents and doctors over who should judge the quality of life of a 17-month-old child.

Doctors at an unnamed hospital want permission to remove a ventilator from the boy, who is being identified only as "M.B." for privacy reasons. The child has spinal muscular atrophy, a type of motor neuron disease that has weakened his muscles to the point that he cannot eat or breathe on his own. The doctors claim that his condition continues to deteriorate and the quality of his life is so "intolerable" that he should be removed from the ventilator to "die with dignity".

Cases in which doctors' opinions have clashed with the wishes of parents over the fate of children with brain injuries or other mental disabilities are not new.

What makes this case unusual, and potentially groundbreaking, is that M.B.'s brain is not considered damaged in any way. In fact, his parents claim, he is fully able to understand what is going on around him; he just has not been able to express his wishes because he can move very little. They want their son to undergo a tracheotomy -- an operation in which a breathing tube would be permanently inserted through a hole in his throat -- so that he can go home with them to enjoy as normal a life as possible.

On Monday, one of M.B.'s doctors testified before Mr. Justice Holman of the High Court's Family Division, that it would be "truly in our patient's best interests" to disconnect the ventilator machine. "He has an intolerable life," said another doctor.

After being shown video, in which M.B. appeared to move his foot in response to his mother's request, a Dr. S. said he was surprised. Still, he said of the boy, "He is a profoundly disabled child who will remain so, and there has not been any significant change to his condition."

On Wednesday, the boy's father, who is Muslim, said that doctors should not "play God" with his son's life.

"It was God who gave us life and God will take it whatever the situation, good condition, sad, or whatever your condition," he explained. "You've got a certain time to die -- that's what I believe."

Also on Wednesday, M.B.'s mother testified that her son enjoys some children's television programs, Jungle Book songs, his Barney the Dinosaur toy, his siblings and his parents. She said she believes her son's condition has actually started to improve.

"Since the age of seven weeks he has never moved his feet, but all of a sudden he's moving them now," she said.

Justice Holman said Thursday that a key factor in deciding whether the ventilator should be switched off was how aware the boy is of his surroundings.

"If we knew for sure that actually he was definitely enjoying television programs, enjoying seeing his family, surely we wouldn't switch this off. If we knew for sure that he was getting pleasures, I fear it would be a strong thing to say that all these burdens outweighed the benefits."

A doctor representing the hospital said M.B.'s parents are "imagining" his improvements.

"Of course they would want to believe their child is recognizing them and that he’s enjoying the tactile senses. Any parent would," Dr. Huw Lloyd told the court. "But they may have exaggerated the situation. Any parent would want to say, to imagine, they are seeing improvements but there clearly haven't been improvements."

The British Council of Disabled People issued a statement this week noting that courts have been reluctant to go against doctors who "for too long . . . have wrongly judged disabled babies' quality of life and how long disabled people have got to live."

The advocacy group noted that many people with spinal muscular atrophy lead long, meaningful lives.

"The question of length of life would not be featured in a decision if a non-disabled baby was in need of lifesaving treatment," BCODP member Simone Aspis said. "This clearly shows how doctors' discriminatory attitudes still prevail when deciding what is in a disabled baby's best interests."

Justice Holman asked lawyers on both sides to make their final submissions to him on Friday. He said he would not rule on the case until next week at the earliest.

The hearing began last Wednesday, less than a week after another judge ruled that St. Mary's Hospital could refuse a ventilator for two-year-old Charlotte Wyatt if she stops breathing.

Related:
"Baby's life intolerable, court hears" (The Guardian)
)
http://society.guardian.co.uk/health/story/0,,1724741,00.html
"Baby's dad says 'don't play God'" (BBC News)
http://news.bbc.co.uk/1/hi/health/4781794.stm
"Our son can smile, he can cry. His life is worth living and we want him home" (The Telegraph)
http://www.inclusiondaily.com/news/06/red/0310a.htm
"Parents are 'imagining' recovery of dying son" (The Times)
http://www.timesonline.co.uk/article/0,,2-2078776,00.html
"Ben's winning battle against SMA" (BBC News)
http://news.bbc.co.uk/1/hi/health/4781860.stm

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