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Baby RB’s father gives up fight to keep son on life support

Baby RB’s father agreed with the mother and medical experts that removal of life support was the best option after hearing six days of testimony.

Baby RB, born with a debilitating genetic defect that causes muscles to malfunction, will be taken off life support after the father withdrew his opposition to the action, originally proposed by the mother.

The High Court’s Justice McFarlane gave a lengthy and carefully-worded statement, praising the estranged couple — identified only as Ms. KM and Mr. AB — for their dedication to their son’s plight.

Justice McFarlane said: “It is a fact that K and A have spent the most part of each and every day of the last 13 months at RB’s bedside, doing what they can to care for him, and, when the opportunity arises, to interest and stimulate him, seizing upon any sign of a spark and trying to develop it into something more.”

“They have put their adult lives on hold. The stress has been immense. It has cost them their relationship, but they still work together and do what they can to support their son.”

“When faced with the awfulness of the situation in which they found themselves, these two young people have stepped up to the plate and discharged the responsibility that life had thrust upon them by each showing 100 percent commitment to their child in a manner which can only command profound respect and admiration.”

The father changed his mind about maintaining life support after hearing six days of testimony from medical experts, most agreeing that his son’s condition will likely never improve. Most testimony given expressed concerns that the child couldn’t communicate his pain.

In a joint statement issued by the lawyers of the parents and the hospital, the couple said: “Although we are separated, we have always been united in wanting the best possible care for our son so that he may have the best quality of life. We have been at his bedside daily these last 13 months. We now wish to spend what little time remains with our beloved son.”

With the finalization of the order by the High Court, Baby RB will be given a sedative and then taken off life support in the next few days.

         

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Right-to-die-trial Baby RB: A mother’s wishes outweigh a father’s opinion

A mother’s wishes over her child’s care outweigh a father’s opinion, a right-to-die trial was told yesterday.

The mother, Miss KM, agrees with the doctors view, that his quality of life is so poor that he should be allowed to die in peace, his father, Mr RB, believes everything must be done to keep their child alive. The child, known as Baby RB is unable to swallow or breathe unaided and so is reliant on a ventilator around the clock.

The High Court has to make the heart-breaking decision for them, Mr Justice McFarlane presides.

Internationally renowned respiratory paediatrician, Prof Bush, who has been a consultant for almost two decades, said of the mother’s view:

“As a paediatrician, I think the views of the mother should always be taken very, very seriously,

“Not to trivialise the views of the father, but most paediatricians would find it very, very difficult to overrule a mother.”

Representing Mr RB, Martin Westgate, asked whether it was because she was the mother, or because Miss KM supported the medical view that life support should be withdrawn.

“It is because it’s the mother that I put particular weight on her views,” he said.

“If the mother expresses a view to me in my ordinary clinical practice, that’s something I take very, very seriously indeed… and the father as well.

“I try to give considerable weight to his views. He clearly loves his son and is very devoted. He has clearly spent many hours by his bedside, trying to interact with his son.”

Mr RB’s lawyers called in the consultant professor of paediatric respirology at Imperial College London.

They argue that a tracheostomy would enable his son to leave hospital and be cared for at home.

Initially, Mr Westgate said Prof Bush might be willing to perform the procedure but having visited Baby RB this weekend, the consultant clarified his position.

“My conclusion was that Baby RB best interests would not be served by a tracheostomy and ventilation at home,” he said.

“My greatest worry in these circumstances is a child whose neurological condition progresses and is not able to communicate.

“They have a normal brain inside a completely immobile and incommunicative body - so called locked-in syndrome.”

Prof Bush said a tracheostomy would only prolong his life and not cure his condition.

“My concern about the treatment is that as he gets older and develops that he will become increasingly frustrated about his inability to communicate, his inability to interact.”

“The boy would probably develop curvature of the spine and other medical problems, and would be unable to communicate his pain,” said Prof Bush.

The court heard how Baby RB, who is not expected to reach his third birthday, had deteriorated in the last seven days, with his muscles weakening even further. Baby RB suffers from a congenital myasthenic syndrome, where the signal between the nerves and the muscles don’t work properly, making it difficult to move.

His primary nurse, Nurse P, who cannot be named for legal reasons, said he used to be able to open his eyes and move his arms, but had not done so for weeks.

She said: “If you put a toy in his hands, he will grasp his fingers around the toy, but quite quickly loses his grip.

“The only movement I have seen is if I have supported Baby RB, I have held his hands and clapped them together.”

Referring to Miss KM and Mr RB, she said: “They are brilliant, they are great parents. They love him dearly, they are constantly at his bedside.

“They both clearly want what they feel is best for Baby RB.”

As Nurse P gave her evidence, Miss KM leaned forward and listened carefully with tears in her eyes.

The case continues.