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Parents Battle Over Infant on Life Support

~Jennifer - posted on 11/02/2009 ( 8 moms have responded )




Dad Fights to Keep Baby on Life Support:

(Nov. 2) -- 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 sought High Court permission Monday to remove the boy from the ventilator that allows him to breathe, British media reported.

"RB's mother has sat by her son's bedside every day since he was born," her lawyer, Anthony Fairweather, said in a statement, according to Sky News. "In her mind the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child."

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 the 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first time a British court has gone against the wishes of a parent and ruled that life support can be discontinued or withdrawn from a child who does not have brain damage, the Guardian newspaper said.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.

What is CMS?

Congenital myasthenic syndromes (CMS) are a family of inherited neuromuscular disorder characterized usually by weakness and easy fatigability. There are several types and symptoms range widely. Symptoms include weakness, especially of the eye, mouth, and throat that may worsen with activity, droopy eyelids, curvature of the spine (scoliosis), and feeding and respiratory problems, and symptoms begin most often after birth or before adolescence. It can improve after severe symptoms appear at birth but may worsen late in adulthood. There is no cure and treatments range in effectiveness on a case-by-case basis. The prevalence of CMS is estimated at 1 in 500,000 in Europe. CMS is similar to myasthenia gravis (MG) which is much more prevalent (around 1 in 10,000), but while MG is an autoimmune disease, CMS is not. Because CMS is inherited, there are often relatives with similar symptoms.


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Jess - posted on 03/03/2010




It seems he has some ability to move, I mean he plays with toys. I wouldn't want to be the person making the decision though. I think that if their is a treatment option that could help him, then take it ! If its life threatening treatment than nature will have the final say !

And if they do switch of his life support, think about how he will die. This isn't like putting your sick puppy to sleep. There isn't an injection they can give him to do it gently. He will suffocate. Im sorry but I couldn't do that to my child ! I would be clinging to any hope or any treatment until the very end. I'm one of those people that would rather be on life support than dead ! I guess the courts will just have to decide.

Jocelyn - posted on 03/01/2010




I'm also with Sharon on this one.
A life hooked up to machines is no life at all. I feel really bad for the father because it sounds like he hasn't really come to terms with the situation. I realize that the baby is actually able to think, but I can't image a worse hell. Not able to move, not able to talk, nothing. Just literally trapped in your own body with no way out. Set him free while he is still a baby, don't let him suffer for years just because you don't want him to die. It just seems selfish imo. But I can see where he's coming from, it's his son, it's got to be the hardest decision he will ever make, but the longer he puts it off the harder it is going to be.

Jaime - posted on 03/01/2010




I'm with Sharon on this one...This child is living with a fully-functioning brain in the shell of a non-functioning body--one that might only slightly improve (breathing) with the help of machines, but will most certainly not allow for any kind of independence or freedom from the grips of such a debilitating neuromuscular disease.

Sharon - posted on 11/03/2009




Life more valuable?

Maybe I'm looking at this wrong way?

But my thoughts are...

....who wants to live tethered to MACHINES? Breathing for you, feeding you

....never to go outside,

....never to have a relationship

....never to speak or communicate beyond - maybe eyeblinks - if he has that much control even.

From what I read - he'll be a lump of meat with a brain in a bed. He can't even breathe for himself.

I also believe in reincarnation. Something went wrong for this poor child, maybe they'll go better in the next round.

I would not want to live like they propose this child should. I would not want a child to face imminent death daily with the knowledge of the impending death. I'd want to spare them the anguish of knowing their death was approaching, that their death would near cripple me with grief, the knowledge that their life is pure pain emotionally and physically from the machines and infection..... no I cannot be that cruel.

Traci - posted on 11/03/2009




I'm with the father on this one. Just because the child doesn't have the same quality of life that we, as healthy people, have...doesn't make his life any less valuable than ours.

Jodi - posted on 11/02/2009




I saw this on TV this morning, but they also said that the father's argument is that it is still possible to insert a breathing tube into him and could potentially still lead to the boy having a quality of life that is sufficient to be able to argue he should now be allowed to die. Apparently his brain functioning is normal, but evidently his muscular functions are inhibited (which accounts for the inability to breathe on his own). Obviously we don't all know the full story, but there have been cases of children survive and have "reasonable" quality of life with inserted breathing tubes.

To be honest, I am not sure which side of the fence I am on this one. I can see why both of them feel the way they do.

Sharon - posted on 11/02/2009




Set back and not personally involved, the poor baby doesn't sound like he'll have any quality of life. A brain trapped in a shell.

I keep thinking of Stephen Hawking, but really? What are the chances? The father isn't ready to let go and my heart breaks for him. But my heart also goes out to the mother who is in pain too, watching this child suffer minute by minute.

Ultimately I think she & the hospital are right.

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