Yesterday London Live invited Researching Reform to discuss the distressing decision to take Charlie Gard, the baby suffering from Mitochondrial Depletion Syndrome, off life support. The decision was made yesterday by Justice Francis in the family division, after reviewing expert medical opinions in the case. Charlie’s parents had been fighting to get pioneering treatment for their son, which may have prevented him from dying.

We spoke to London Live about the ruling, and why, despite the arguments put forward by medical experts, we strongly felt the decision was wrong.

Mitochondrial Depletion Syndrome is a rare disease which affects the brain, kidneys and muscles. There are currently only 16 known children carrying the symptoms of the disease, and of those none are as severe as Charlie’s. The pioneering treatment on offer is available in the US, and has helped to treat patients with this condition by reducing the symptoms. And whilst medical experts in the UK and the US all agreed that the treatment if given would not be able to reverse Charlie’s brain damage, no evidence currently exists to suggest that the treatment would not be successful in saving Charlie’s life, or would not improve his quality of life as it stands now.

The entire premise relied upon to remove Charlie from life support was based on subjective opinions by medical experts who admit that the effects of the pioneering treatment on offer are unknown.

Arguments for denying Charlie treatment are highly questionable. Doctors took the view that although no evidence of Charlie being in pain has been registered by diagnostic machines or professionals themselves, they concluded that further treatment elsewhere could cause him to suffer. Again, a purely subjective observation and one which contradicts the parents’ who felt that Charlie was not in any pain and with a greater level of brain function than suggested by professionals. 

Bizarrely, a doctor involved also called the parents a “spanner in the works” for trying to seek out what could be potentially life saving treatment.

The email reads: “The spanner in the works has been a parent-driven exploration of all alternatives internationally leading to a new specialist in New York who has recommended a three-month trial of nucleosides.”

When asked about this choice of wording, the doctor told the court that it was just a “clumsy” turn of phrase, saying: “I was trying to suggest that our previous decision to take this to the court as urgently as we could was being held up by something being explored which needed to be explored.

Not convinced? Neither are we. Professional arrogance is a huge problem in the medical sector, and no doubt having a US doctor muscle in on the diagnosis and decision making process would have put a few UK doctors’ noses out of joint. It’s something we’ve seen in other high profile cases, such as the now infamous story of Ashya King, whose parents took him abroad for pioneering treatment against UK doctors’ wishes. (Ashya is now cancer free and back at school). In this case too, UK doctors played down any success the treatment might have and tried to convince the court that the treatment would not work.

In Charlie Gard’s case, medical professionals told the court that even if treatment was allowed, the end result would be so minimal as to be outweighed by what would remain a very poor quality of life. A view not based in any tangible evidence, because treatment on someone like Charlie has never been attempted.

The anti treatment lobby ignore two fundamental points: no one actually knows what the end result of the treatment might be. There is also the possibility that in a few years’ time we may have pioneering treatment which can reduce the symptoms of the disease further, and even reverse the brain damage it causes. If Charlie is still alive, he can benefit immensely from that development.

Given that the parents have managed to raise all the funds necessary to have the treatment, and that medical professionals have conceded that Charlie could travel to America for the pioneering therapy, it seems unbelievably reckless to deny Charlie and his parents this chance.

A chance every parent would take for their child.

Charlie Gard

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