Dad Fights to Keep Baby on Life Support...

16th ave.

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Dad Fights to Keep Baby on Life Support

(Nov. 1) - A British hospital wants to remove a 1-year-old boy born with a rare neuromuscular condition from life support, but the child's father is fighting to keep him alive.
The baby's mother agrees with hospital officials, who plan to seek High Court permission Monday to remove the boy from the ventilator that allows him to breathe, British newspapers reported Sunday.
The infant, known only as "Baby RB," was born with congenital myasthenic syndrome, a muscle weakness that limits the movement of his limbs and his ability to breathe on his own. He has been in the hospital since birth.
Doctors treating the baby say he has such poor quality of life that it's not in his best interests to keep him alive. But lawyers for the father argue that child's brain is not affected by the condition and that Baby RB can see, hear, feel, recognize his parents and even play with toys.
"This is a tragic case. 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," Christopher Cuddihee, a lawyer representing the father, told the Sunday Telegraph.
The parents are separated but both have been living in a special dedicated family accommodation near the hospital since Baby RB's birth. Their identities were withheld for legal reasons.
If the hospital's application is granted, 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first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage, the Guardian newspaper said.
Congenital myasthenic syndrome is the result of a rare gene abnormality that affects the link between the nerve and muscle, destroying the "signal" between the two when the nerve wants the muscle to contract.
Only 300 people in the United Kingdom are believed to have CMS, and they are affected with varying degrees of severity.
 

bssage

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They are both right and wrong. I cant imagine having to make that type of decision. That would be my hell.
 

IADad

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I can't imagine, I don't think I could say "let him die" but then again, what kind of life is it dependent on a ventilator? If it was a kitten, we'd say the humane thing to do would be to put it down.....I just think of my little ones eyes, how could you look into them and say, "okay turn off the machine?" I suppose only with a lot of prayer and deep seeded belife he'd be going to a better place, but I don't know I could do it.
 

16th ave.

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i can't imagine either one. what kind of life will the boy live after his parents are gone? but how can ya pull the plug on a baby who is aware? i can only think the plug should have been pulled one they realized what kind of condition he had if it was going to be pulled at all. why put an innocent baby through something like this?
 

Jeremy+3

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16th ave., not all people with this condition are severely effected, we have a boy at school (it is a special school) with this condition, only he also does have a degree of brain damage from measles. He can walk talk, run around, drive us mad and do what ever he wants, for some people they are hardly effected and you can only tell that muscle control is different with really fast movements and sometimes they don't have reflex actions, the boy at our school doesn't so if in P.E they are playing a game with a ball he will just watch it come towards him and then smack him into him.
It develops as well, so it is one of those things where you cannot tell how bad it is going to be.
 

16th ave.

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Jeremy+3 said:
The father has dropped the case.
thanks for trying to help with understanding the condition.
saw something about it getting dropped. thanks for the update. try to get the news article about it on here later.

thoughts go out to the family.