Baby RB has died

November 14, 2009 by Baby Chums
Filed under: News

The little boy known as Baby RB has died.

Baby RB was dressed in his green Ted Baker baby grow and carried gently from his hospital bed to a sofa. He slipped away, under heavy sedation after switching off his ventilator. Parents united, holding his hands and remaining by his side all day, telling him they loved him.

This heartbreaking scene was the very private end to a very public right-to-life battle.

The mother spoke to the Mail on Sundays saying that she and the baby’s father: “sat on a sofa and just cuddled him. I wanted to make sure he had lots of cuddles so he was OK.

“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. It made him look so peaceful, he was so beautiful.

“I kept on kissing him. The last thing I said to him was that I loved him and would always be there for him.

“Both of us were in bits, but it was such a relief. I know he’s in a better place, running around and eating chocolate. That’s how I like to think of him. We stayed with him all day. It was so hard to walk away, knowing it was the last time I’d see him, but I thought, he’ll want a rest now. He was at peace.
‘It was such a relief. He’s in a better place”

“I woke up this morning thinking I’d go to the hospital. Then I realised he was gone. It will take me a long time to realise that. It’s all I’ve known for so long.

“I’m in a daze – I’m in denial. I can’t think about the funeral yet as I’m taking each hour as it comes. But I won’t remember him as this boy in a hospital bed. I’ll always think of him as my little baby”

Baby RB was the subject of an emotional High Court case after his father challenged doctors who argued that the child’s life support should be switched off, “in his best interests”.

The father who is amicably separated from the mother, later withdrew his objections and the judge agreed he should be allowed to die in peace.

The mother of Baby RB said she felt her son had become a “guinea pig”. “Anyone who judges me doesn’t know how hard it was,” she added. “We could have withdrawn care at four weeks old but we didn’t - we fought for him.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.”

Baby RB, who cannot be named for legal reasons, was born on October 10 2008 after a normal labour. But he was extremely sick and had to be kept alive on a ventilator in a neonatal intensive case unit.

Doctors diagnosed him as suffering a form of congenital myasthenic syndrome (CMS), a rare neuromuscular condition that severely restricted his ability to breathe and move.