Mother tells of fight over sick son
The mother of a severely-disabled boy who became the subject of a High Court case between his parents over the switching off of his life support machine has revealed how she broke the news to her partner that she no longer wanted to see her son suffer.
The father of the child - named for the first time as baby Ronnie - challenged doctors who argued his ventilator should be switched off "in his best interests".
He later withdrew his objections and the judge agreed "Baby RB" should be allowed to die in November 2009.
In an interview with Victoria Derbyshire on BBC Radio 5 Live, the identities of Ronnie and his mother Kelly Bickell were revealed after a legal order was partially lifted. The court order still prevents media from naming the hospital trust or Ronnie's father, who is referred to during the interview as "Nick".
Recalling his birth, Ms Bickell said Ronnie was blue and did not move. He was eventually diagnosed with a form of congenital myasthenic syndrome, a rare neuromuscular condition that severely restricted his ability to breathe and move
Seeing him for the first time surrounded by tubes, she said she felt "distraught", adding: "We thought we were going to have a healthy little baby boy, so it was a big shock to both of us."
She described how they lived at the hospital for months to support and care for their son, but it was "very hard" when he remained unresponsive. Describing relations with the medical staff, she said: "All the nurses and the doctors had their own view that we should turn the ventilator off... we were trying to fight back and get them to do more tests, it got really difficult and hard."
She said it was not until a short time away from the hospital when he was six months old that she realised "how ill Ronnie really was".
The parents had been previously united against the hospital's legal moves to turn off Ronnie's ventilator, but on her return she broke the news to her partner she felt the same way. This precipitated the couple's break-up.
She said: "First of all I did want Ronnie to have a tracheostomy, the same as Nick and I did want Ronnie to come home, but then after having that break away and coming back and seeing him, that's when I realised, 'I don't want that for my son, that's not right for him. It can't do anything, he must be in pain."