As I know myself, there can be no winners in the Charlie Gard case

Published by The Guardian (26th July, 2017)

At the centre of the Charlie Gard  story, which has captured global attention, is one simple thing: the tragedy of a child born with a life-altering genetic defect. The boy has a rare mitochondrial disease that causes the body’s cells and then organs to shut down, leaving him deaf, suffering epilepsy and unable to move or breathe by himself. ‘Life can be so cruel. So bloody cruel,’ said his father earlier this year. ‘Why did this have to happen to us?’

I understand his feelings. My daughter was born with a rare genetic condition. She needs 24-hour care, suffers severe epilepsy and is unable to walk or talk. She can hear – and loves music – but cannot see. I remember every second of that fateful December day when we were told that our beautiful baby girl had what was then called brain damage – from the doctor’s sensitive words as he broke the shattering news, to the raindrops falling on streets thronged with happy, festive shoppers that merged with tears streaming down my face.

Yet we were fortunate. Despite many ups and downs, including times we prepared for our daughter’s death, she remains alive. She is now a young adult, happy most of the time when not suffering seizures. How different to poor Charlie, and the pain endured by his parents, Connie Yates and Chris Gard, whose desperate struggle to save their son’s life, against the wishes of his doctors, ended this week.

This was a case with no winners: not Charlie, not his parents, not the doctors, not the hospital. Beyond the tragedy of a little boy lying in his bed attached to machines keeping him alive, the only other certainty, for those of us not involved in the case, is that there was clearly a breakdown in communication between parents and medical staff at Great Ormond Street hospital. This spiralled into a very public confrontation, abused by some outside players for their own, self-serving purposes.

Charlie’s parents are a thoughtful couple determined to do the best for their child – consulting experts, and dignified to the end. From bitter personal experience, my sympathies tend to be with parents in such disputed circumstances. I can recall, however, the darkness that descends when hopes are dashed and life is ripped apart by a devastating diagnosis. It is, as they said, the worst thing you will ever know. I went through the wall of bad depression, only later learning that this was a form of mourning. Eventually I learned to accept my altered life – although sometimes I still wonder ‘why us?’ and hate seeing her suffer those vile seizures.

I discovered that doctors can be arrogant and dismissive, and are far from infallible. And I found that despite its halo – displayed to the world with that absurd section of the London Olympics opening ceremony – Great Ormond Street is just another National Health Service hospital, with all that entails. Some staff were fantastic, notably the palliative care team, who kept us going through tough times and helped sort vital support for my daughter. Others were woeful: losing case files, pushing pet research projects on us against our wishes, even lying over mislaid tests. Eventually we transferred elsewhere.

The hospital should reflect on how this tragic situation spiralled out of control. I have been informed of one other current case in which a family feel its medical staff are bullying them by disregarding concerns over a course of treatment. Other parents tell of doctors badly mishandling that life-changing moment of disclosing a diagnosis. One woman says she was told her son had inherited visual impairment as a result of Norrie disease, but only learned this might mean progressive hearing loss and learning disabilities when searching the internet as she sat in the pharmacy.

Yet it has been depressing to see the circus spring up around this case, reaching from the White House to the Vatican. It is hard not to question why the American neurologist  Michio Hirano, who had offered to help Charlie, had not accepted an invitation to see the child for six months before appearing in court earlier this month. The court heard this week that the doctor had admitted to having a ‘financial interest’ in the proposed treatment method. And although I have criticised the NHS, it is loathsome to see this critically ill infant used by American conservatives to attack crucial public provision of healthcare. This is about one sad case, not systemic failure.

If there is a wider lesson to learn, it may be that medicine and science are racing ahead of society. The surgeon and bestselling author Atul Gawande has raised important questions about approaches at the end of human life, asking whether we should think more about the wellbeing of terminally ill patients rather than focus so sharply on survival at all costs. Perhaps it is time to ponder now what would happen if Charlie Gard had survived and lived with profound disabilities.

For there is a paucity of services to help such children and adults live fulfilling lives, while families are left to struggle against a system that seems designed to destroy rather than support them. Thanks to the government overloading austerity on local authorities, even some of this inadequate provision is being shredded.

But then, people with disabilities, especially those with learning disorders, always get left on the fringe. Note how the BBC pay row was seen through the prism of gender, then race, then class – but not one mention of the failure to have a single member of our biggest minority given one of those lucrative top jobs by the state broadcaster.

Charlie Gard’s parents insist that their son might have had a chance of improving, had therapy been allowed to start sooner. We will never know if they are right. But once again, this case has shown the power of parental love, perhaps the most powerful force in society. ‘We could not have more love and pride for our beautiful boy,’ said his mother in her moving statement to the court this week. On this point, at least, the world can agree.

Categorised in: Disability, Health, home page, Public policy