Charlie Gard: a life worth a legacy…

Charlie Gard will probably die in the next few days. His death I hope will be private, peaceful and dignified and my sincere sympathy to his parents Connie Yates and Chris Gard and I truly hope they can move on with their lives after the torture of the last few months.

Charlie’s short, tragic life has been lived too much in the glare of publicity, and as a result many will know of his case and the legal wranglings surrounding it, but I wonder what impact, if any, his tiny life will have on our attitudes to medical miracles.

What have we learnt from this unedifying mess where the Health Service was pitched against battling and desperate parents? The excellent medical staff of Great Ormond Street Hospital, who deals daily with the most difficult of childhood diseases, will not easily forget Charlie given that beyond their exceptional professionalism, they too, like his parents, are only human with human emotions and this must have been a particularly difficult case.

Charlie was born in August 2016 with a rare genetic condition; mitochondrial depletion syndrome which affected many of his organs including his brain and from the start it was clear, to the doctors at least, he would not survive. His loving parents strongly disagreed and the hospital, having done what they could, felt compelled to seek a court order that would allow them to switch off his life support and allow him to die. They won in the Family Division of the High Court, an appeal by the parents was dismissed, the Supreme Court agreed with the doctors as did the European Court of Human Rights. For the parents this is now the end of the legal process.

His parents’ fight was to keep Charlie alive so they could bring him to America for treatment. On the one hand this is completely understandable, commendable even. This is what parents do. Yet on the other hand their fight might be seen as reckless given the potential pain and discomfort Charlie suffered as they clutched at straws. The straw they clutched at was an unknown and untried treatment with nucleosides in America.

America spends vast sums on worthless and sometimes dangerous medicines and medical interventions which reflects its global position half way down healthy nations list. Spent properly they would be the healthiest nation on earth. Sadly American culture supports a cavalier, risky approach to treatment which is more to do with the commercial acumen of physicians rather than the clinical needs of patients. Where they offer a glimmer of hope they make a tidy profit. This is surprisingly seductive to despairing families. The Gard family raised £1.2 million towards Charlie treatment money which will now be given to I hope a UK based medical charity.

A Tyrone family is hugely indebt by keeping their son in America so that he can receive cannabis oil treatment for uncontrolled epilepsy, Wee-Oscar, the exceptionally brave and charismatic Oscar Knox, became a media sensation as he battled neuroblastoma in 2012 and got the all clear after family and friends raised over £250,000 to send him to America for an advanced experimental form of immunotherapy. He died of the disease in 2014.

Our natural instinct is to hope and this makes us believe all too easily in miracles. Modern medical practice does so many amazing things but it does not do miracles. We all need to become more dispassionate and less naive and be clear that, due to the medical culture in America, some American physicians are merely sophisticated purveyors of snake oil and their commitment to profit blinds them to the real needs of their patients. That should be the legacy of Charlie Gard.

I am a pharmacist in Belfast.