Page last updated at 07:41 GMT, Sunday, 15 November 2009

Mother's grief at baby RB death

Baby feet
Baby RB suffers from a rare, genetic muscle condition

A severely ill baby at the centre of a legal battle over his treatment has died, his mother has told newspapers.

The father of the one-year-old - known as Baby RB - had fought to stop a hospital withdrawing life support from his son, but later dropped his case.

The hospital was backed by the mother of Baby RB, born with a rare condition that limits independent breathing.

His mother says both parents were at his side when RB's life support system was switched off on Friday.

Baby RB is thought to have a condition called congenital myasthenic syndrome (CMS), which severely inhibits the ability to breathe independently and to move limbs. He has been in hospital since birth.

I've loved every second, every minute I've had with my son and in my eyes he's still my perfect little boy
Baby RB's mother

His mother told the Mail on Sunday: "When they took his tube out, I was cuddling him. It was so amazing to see him without it - it's the longest we had seen his face properly.

"The last thing I said to him was that I loved him and would always be there for him."

She said she felt her son had become a "guinea pig".

"Anyone who judges me doesn't know how hard it was. We could have withdrawn care at four weeks old but we didn't - we fought for him.

"I've loved every second, every minute I've had with my son and in my eyes he's still my perfect little boy."

Speaking to the Sunday Mirror, his mother spoke of her relief:

"Both of us were in bits but it was such a relief. I know he is in a better place running around and eating chocolate."

'Dreams dashed'

The move to withdraw treatment had initially been strongly opposed by the child's father - who is separated from RB's mother - at a High Court hearing. But he changed his mind after hearing medical evidence which suggested it would be in the best interests of the child if medical support was withdrawn.

The judge welcomed the decision, describing it as a "sad, but in my view inevitable outcome".

He paid tribute to the parents, who he said had acted in an exemplary manner.

He said: "It is, I suspect, impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents.

"In one moment all of the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterised by worry, stress, exhaustion, confusion and no doubt great sadness."

Lawyers representing RB's parents and the hospital trust said that although the couple had separated they were "united" in wanting the best for their son.

The statement said the decision to withdraw life support from the child had been "agonisingly difficult".

The hospital's legal team argued during the hearing that the baby faced a "miserable, sad and pitiful existence".

They were particularly concerned that the child could not communicate whether treatment - such as regular suctioning of his airways to remove fluid - caused him pain.

For legal reasons, none of the parties in the court case can be identified.

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