The mother who fought an emotional high-court battle with the father of her severely disabled son over the infant's fate has described how she and the father cuddled the child after his life support system was switched off.
The baby, who could not be named for legal reasons and was known as Baby RB, died on Nov. 13, shortly after the machines that helped him breathe throughout his 13 months of life were turned off. Three days before that, the child's father withdrew his objection to pleas by Baby RB's mother and doctors that his life support system should end.
The dispute between the parents, who are in their 20s and are now separated, was argued before the high court in London for a week. The father then changed his mind.
Expert witnesses said RB, who was born with a form of congenital myasthenic syndrome, a rare neuromuscular condition that severely restricted his ability to breathe and move, was not able to show he was in pain, despite regular intrusive treatment, notably the suctioning of his airways to remove fluid. The father argued that since the child had seemingly normal brain functions he should be kept alive.
The mother told newspapers that both parents had held the infant as he died.
"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," she told the Mail on Sunday.
She told the Sunday Mirror: "I have no regrets. I didn't want him to be in any more pain. All the tests he had to put up with. He was being prodded and poked. He must have been screaming inside, thinking, 'Mum, why are you letting them do this to me?' I'm grateful for every second we've had together. But it was time to let him go.
The Muscular Dystrophy Campaign in Britain issued the following statement about the Baby RB case:
A baby with a rare neuromuscular condition who has been on a ventilator in hospital since birth, known for legal reasons as Baby RB, has been at the centre of a legal debate between his parents - a debate which has now ended with the baby's father withdrawing his objections to the ventilator being switched off. He was born with congenital myasthenic syndrome, a muscle weakness that limits the movement of his limbs and his ability to breathe on his own.
Muscular Dystrophy Campaign's statement on this case:
The Baby RB case has highlighted issues which, although rarely brought to the attention of the media, can affect families coping with muscle disease. The Muscular Dystrophy Campaign recognises the tragic situation that Baby RB's parents find themselves in and that unfortunately the resolution of this case is devastating for all parties involved.
Congenital myasthenic syndrome is the collective term for a group of inherited congenital disorders that affect the way messages from the nerves are sent across to the muscles. Symptoms normally start in the first years of life with varied disability ranging from mild to severe muscle weakness.
The Muscular Dystrophy Campaign is here to provide support for all families affected by muscle disease through our freephone information support line and care team. We also continue to invest over £1million each year into pioneering research to find treatments and cures for muscle disease.
