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Husband battles to halt bid to let sick child die
A CARING dad and mum are locked in a heartbreaking battle with each other over their severely disabled baby's right to life.
The tragic one-year-old boy needs a ventilator to breathe and doctors believe he should be allowed to die.
His mother is BACKING the hospital's bid tomorrow to seek a High Court order to take the tot off life support. But the father is fighting the move.
The mite - known only as Baby RB - suffers from a rare genetic fault which means his muscles are too weak for him to move limbs effectively or breathe unaided.
But his brain has not been affected and he is aware of his surroundings. He can see and hear and enjoys being read stories and listening to music.
The parents, both in their twenties - who cannot be named for legal reasons - have separated since the birth, but have remained loyally at their son's bedside.
The hospital will this week seek court permission to remove Baby RB from his ventilator - which will result in almost immediate death.
If the hospital is successful in its bid, it will be the first time a British court has agreed to a request from an NHS trust - against the will of a parent - to withdraw life support for a child not suffering brain damage.
The dad is pinning his hopes on video footage and photos of the boy playing contentedly in hospital to convince experts in court his son should be allowed to live.
His solicitor, Christopher Cuddihee, of London law firm Kaim Todner, said: "This is a tragic situation involving a child born with the odds stacked against him.
"His father is committed to bringing Baby RB home where he can be cherished and nurtured and given the chance to have as happy a life as possible.
"We only hope the court agrees and allows our client the opportunity to do what he believes is in his son's best interests."
Baby RB is one of only 300 people in the UK suffering from the condition congenital myas- thenic syndrome - which affects sufferers to varying degrees.
It disrupts the transmission of signals between the nerves and the muscles. If the nerves can't pass messages to the muscles, the muscles don't know when to move.
There are about a dozen different forms of the condition varying in severity from being so mild a sufferer can live an almost normal life, to being so severe they die within days of birth.
Sufferers are vulnerable to lung infections and pneumonia if they can't breathe or swallow and to infections around the tube if they have to be fed intravenously.
There is no cure for the syndrome and the only treatment available is with drugs to improve symptoms - but they are not effective on everyone.
Although the condition is inherited it doesn't necessarily pass from generation to generation so Baby RB's parents may have had no clue that one of them carried the defective gene.
jane.atkinson@notw.co.uk
A Sad No-win Situation
By HILARY JONES, News of the World doctor
IT'S unlikely doctors would be willing to switch off life support if they thought there was even a remote chance of this child leading a relatively normal life, without treatment that would potentially cause distress.
This must be one of the worst genetic subtypes of the condition.
It wouldn't just affect movement but cause breathing and feeding problems.
In a situation like this, with the child on artificial ventilation, I can understand a parent saying: "I want to turn the life support off, I think this is a life of suffering."
Of course, the other parent might say: "I love my child no matter what, and can't possibly end their life".
I can sympathise with either view.
Sadly, whatever happens will result in an unhappy outcome.
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This article has 7 comments
My daughter has Congenital Myasthenic Syndrome, she had a very rough first couple of years, there however is treatment and she has progressed to an almost normal childhood, regular school , friends , outside play w/ out a wheelchair, we saw Dr. Engel at the Mayo Clinic in Rochester, Minn. the absoulute expert in this disease and he made a tremendous difference in her care. Please do not end this childs life , there is always the chance of this getting better, especially with the right treatment, and better treatments are being found every day, there is a drug in the states called 3,4 DAP that is doing miraculous things with CMS. You should not even consider ending this childs life, its inhumane as far as I'm concerned, there are survivors of worse maladies contributing to society in awesome ways every day!!
By Laurie K.. Posted November 12 2009 at 3:09 PM.
Some of the greatest minds of our world have suffered this or worse conditions and gone on to contribute amazingly to the world of Mathematics and other Sciences. DON'T you doctors DARE to assume that this childs life is less than any other! Never EVER give up or you will regret it every day of your life. To turn off this childs ventilator is NOT kindness it is murder. Good Luck to the strong heart of this childs father. I really genuinely hope you are successful.
By Dawn Mather.. Posted November 2 2009 at 8:55 PM.
but what when the baby grows up and realises all he can do is lie there not being able to move, requiring a machine to breathe. Watching TV and watching other people do things he'd never be able to do. I'm not sure he'd have a happy life.
No doubt he'd grow up with a lot of love but i dont think that would be enough.
Just imagine yourself in a position like his, where you're pretty much paralysed, all u can do is watch the world go by. I know I wouldn't want to live like that would you?
By T.. Posted November 1 2009 at 4:07 PM.
my son also has congenital myasthenic syndrome. We was told he would never, walk, talk, eat drink.....or do anything. He is now 3 and leads a "normal" life with medication which he has every 4 hours called Pyridostigmine. Every so often he gets poorly and needs ventilation but other than that he goes to a main strea, school and can even run.
PLEASE DO NOT LISTEN TO EVERYTHING THAT THE DOCTORS SAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This little boy desverves to live, and it is true....the first year or maybe two are definately the worst!!!
There is a clinic in USA called the Mayo Clinic who specialise in this condition, please get in touch with them they may be able to help you.
Please get in touch if you need any more information.
Good Luck to Dad for court!!!!!!!!!!!!!
By sp.. Posted November 1 2009 at 3:50 PM.
there might not be a cure yet but if you let him die and one is discovered you will never forgive yourselfs
By kelly gardner.. Posted November 1 2009 at 3:02 PM.
i think you should give the baby a chance to live, because if not then if you think about it your killing the baby before his life has really begun.
By c.. Posted November 1 2009 at 2:25 PM.
please give this baby a chance to live my 2 year old boy has congenital myasthenia and has done from birth , we was told my son would never walk or talk he will be 3 in december and hes walking and talking , this is help from his meds i know there are different kinds of cms my son has Acetylcholine Receptor Deficiency ,he has a weak neck thraot tummy he was tube feed foe 18 months hes only just strted to eat lumps he still chokes but hes getting there hes a very bright little boy , im also the chairperson for the national chilrens branch for congenital myasthenia /mg
i do understand the different kinds off illness in children but the 21 familys we are in touch with say the first 12 months is the hardist , please get in touch .
By melissa .. Posted November 1 2009 at 12:50 PM.