The tragic story of Charlie Gard is slowly but surely reaching its sad denouement yet a huge number of questions have been raised that remain unanswered. In their moving statement on Monday, Charlie’s parents asserted that had the proposed experimental treatment been initiated earlier in the year, there might have been a chance of him recovering to a point where he may have had a “normal” life. They also stated that this view had been supported by Professor Hirano from New York and other overseas doctors, a point of view in direct contrast to that of Great Ormond Street Hospital (GOSH), who felt that the underlying damage already sustained by Charlie was irreversible as long ago as January. As a paediatrician, I'd like to examine the truth behind those claims.

At first glance, it could be interpreted that the inaction of GOSH resulted in Charlie’s one chance at a normal life being cruelly snatched away from him. This is clearly the view of many individuals, given the abuse and intimidation that has been directed at GOSH staff over the last few weeks. Bear in mind however that in January, the only medical professionals in a position to fully assess Charlie and have enough information to make informed judgments on his prognosis were those at GOSH. GOSH also asked other external, experienced paediatricians to assess him independently, including a metabolic specialist from Southampton whom Charlie’s parents had wanted to assess him. All of these professionals agreed with the GOSH view that his underlying condition had progressed to a point where any intervention would be futile, only serving to prolong the process of dying rather than improving his quality of life.

The world of rare mitochondrial disease research is small and the experts in the world-renowned centres know each other and communicate with each other regularly. It has been reported that GOSH approached Professor Hirano in January 2017 to explore experimental nucleoside therapy (NBT) and invited him to come to London to assess Charlie at that time. GOSH were preparing an ethics committee application to seek permission to use NBT for Charlie when he deteriorated in January.

Charlie Gard's parents' statement in full - 'We are sorry we could not save you'

What was the basis of such a huge divergence of opinion on Charlie’s baseline condition between GOSH and Charlie’s family and the overseas teams? Charlie’s parents have stated that they believe that there was no evidence of “irreversible brain damage” in January. Indeed, he had an MRI scan of his brain that has been described as structurally normal. A normal scan does not mean that a brain is working normally. Charlie was having severe fits that indicated that the function of his brain was compromised and, with knowledge of the natural history of his condition, GOSH recognised that he had reached a point where even with experimental treatment, the likelihood of any significant improvement in his condition was negligible.

Charlie’s parents disagreed and were supported in this by Professor Hirano who provided written statements in support of his parent’s position to be used as evidence in the various court hearings. After the courts’ rulings in favour of GOSH, Hirano then stated that he had new evidence that had not been considered previously which led to the recent return to court. During this process, it transpired that Hirano had never physically assessed Charlie nor had he had sight of his medical records and investigations, including the second opinions of doctors from outside GOSH. It was also revealed that potentially he stood to gain financially from the use of NBT. His evidence flagged up potential hope for the future treatment of mitochondrial diseases but there was nothing to suggest that it could help Charlie following reassessment of his condition.

It is entirely understandable that parents would cling on to any small fragment of hope that they might find; in fact it would be unusual if they didn’t. I am deeply uncomfortable with a clinician giving a confident opinion on potential outcomes and quoting percentage chances of success without having had sight of all the objective information available. Only GOSH, Charlie’s parents and the respective legal teams had seen everything; all others with opinions, including myself, had only seen a limited amount of second-hand information and much of the time this had not been seen in context. Thus any such opinions could only be speculative.

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Yet in spite of this, Hirano was happy to give a concrete opinion in a case where there was a possibility of financial gain for him in using the treatment. The potential conflicts of interest are clear to see but, beyond the ethical debate, the wealth of misinformation that led to death threats towards clinical staff and to politicians jumping on a bandwagon to use Charlie’s dire situation for their own ends could have been avoided with greater transparency around these issues.

If the apparent causes for hope given to Charlie's parents were in fact without solid foundations, then this would be inexcusable. GOSH will have tried at all times to have been as honest and open as possible in their communications with Charlie’s family. Doctors do not like to give bad news and parents do not like to hear it. Thus, when a more optimistic view is put forward human nature would lead any of us to prefer that view to the more pessimistic one and Charlie’s family naturally looked for hope and clung onto what was ultimately a mirage. As a consequence, I imagine they may always have a nagging doubt that they might not have done their best for their son when in reality the outcome was always destined to be dire. The best that can be hoped for now is that Charlie has a dignified and peaceful death, his family can be left to grieve for him and, in time, reach some kind of peace.