The Worst Decision A Parent Could Ever Have To MakeMonica Bielanko
For the first time ever, the British mother who fought to have her severely ill baby’s life support machine turned off is able to tell her story.
Seventeen months ago, the parents of a child known only as “Baby RB” were locked in a legal battle over the right-to-life. A court order, which stopped the parties involved from being named, has been partially lifted. Kelly Bickell is baby RB’s mother. Baby RB is Ronnie. “We thought we was going to have a healthy baby, but when Ronnie came out he wasn’t crying, he wasn’t moving… he was blue.”
Ronnie had a rare genetic condition called congenital myasthenic syndrome (CMS), which made it hard for him to breathe on his own. He was moved to a ventilator. “As Ronnie got older, we realized he couldn’t sit up, he couldn’t hold his own head up. He couldn’t do anything apart from move his little wrists. But Ronnie’s brain was absolutely fine, Bickell tells BBC’s Victoria Derbyshire. “He could see, he could hear”. The doctors told Ronnie’s parents his quality of life was so low that it would not be in his best interests to try to save him and recommended the life support machine be switched off. Initially both parents said no. But then Kelly changed her mind. She remembers telling her partner: “I’m so sorry I don’t want this. I don’t want to put my son through this anymore, I don’t think it’s fair. You know I wouldn’t want a life like it so I thought why would I let my son suffer?”
So Ronnie’s father took the case to court, fighting Kelly and the hospital’s attempt to withdraw his son’s life support. His lawyers argued that the boy’s brain was unaffected. This means he can see, hear, interact and play, they told the court. Despite having to remain in hospital and being dependent on a ventilator to breathe, he enjoys having stories read to him and listening to music, according to the lawyers. As Strollerderby previously reported, Kelly says that’s an argument for letting him go. “In her mind, the intolerable suffering experienced by her son must outweigh her own personal grief should she lose her child,” her lawyer told the Daily Mail.
The case ultimately went to high court. Then Ronnie’s father – who has never been publicly named – changed his mind after hearing medical evidence which suggested it would be in the best interests of the child if medical support was withdrawn.
Four days later, with both parents at his side, one-year-old Ronnie’s life support was switched off. His mother told the Daily Mail, “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. “I don’t know if there’s a heaven, but I’m hoping there is. And I’m just thinking now, you know, that he’s in a better place and he’s probably having so much more fun than when he was laying in a hospital bed.”
The epic tragedy of this story is overwhelming. Imagine dealing with your sweet baby’s illness and then having to fight your spouse to do right by your child. Neither parent is in the wrong here. One truly thought his child could have some sort of quality of life and the other did not want her child to needlessly suffer. The only blessing in the whole thing is that ultimately the father changed his mind. Who could comprehend the madness of being forced by some judge – who has never met your child – to take your baby off life support when you absolutely disagreed?
Two parents, torn by the decision to do right by their child. What would you do?