Consultant paediatrician Dr Ravi Jayaram from the Countess of Chester Hospital has shared his thoughts on the tragic case of terminally ill toddler Alfie Evans.
Alfie, who has a neurodegenerative condition, is on life support at Alder Hey Children’s Hospital in Liverpool .
Alfie’s parents Tom Evans, 21, and Kate James, 20, from Liverpool, have so far had all appeals against a High Court ruling in February to withdraw his life support and take him to Rome for treatment rejected.
This has led to demonstrations outside Alder Hey with reports of hospital workers being abused.
Dr Jayaram told BBC Radio Five Live about the complexities of the case involving 23-month-old Alfie.
He said: “Alfie has a condition that falls into the group of conditions called neurodegenerative conditions – some of these have names and some have not got specific names. This is an important point because one of the arguments being put forward is that there isn’t a diagnosis, there isn’t a name to this neurodegenerative condition.
“But people know what it is and we know that the outlook is grim. The brain gradually effectively just dies away.”
Dr Jayaram said there was a debate around at what point Alfie should receive end-of-life care or whether treatment should continue in the hope of improvement.
Asked why the parents shouldn’t be allowed to take Alfie to Rome to at least try, he responded: “The issue is that in UK law, doctors, nurses, health professionals have to act in the best interests of the child, not the parents, not themselves, not anybody else.
"And the difficulty here is if the chance of any long term improvement is virtually nil then by actually putting Alfie at potential risk, because there are huge risks in transporting critically ill babies. It’s a question of dignity. It puts him at higher risk of dying.”
Dr Jayaram stressed: “I can understand, as a parent myself, you want to cling on to any straw floating by in the sea to stop you from drowning. What I’m really concerned about and what’s amazed me is what’s going on outside Alder Hey at the moment.”
He added: “It’s very interesting listening to what people are saying. I’m sure everybody out there feels they have Alfie’s best interests at heart but the comments that are being made that the doctors and nurses are somehow murderers.
“There was a very interesting comment in your audio before of the lady saying it’s not the choice of the doctors, it’s not the choice of the government. Why is she saying it’s the choice of the government?
“I think what we’re seeing at Alder Hey is a wider reflection of what’s going on in the world at large that there’s this lack of trust of people perceived to be in authority or establishment.”
Dr Jayaram compared the case to that of terminally ill baby Charlie Gard last year whose parents were denied the right to take him to America for experimental treatment following court rulings.
The consultant believed social media had played a ‘huge role’ in this latest case and he strongly feared he himself may be abused online but he felt ‘things need to be said’.