No winning or magic cure for Charlie Gard or his parents

So the tsunami of a medical, legal, ethical, moral and parental conflict surrounding the 11 month old baby Charlie Gard and Great Ormond Street Hospital (GOSH) has worsened. Thanks to some new unpublished research data on an “as yet” unproven experimental treatment that may/might/could improve his condition (although it has never been used on a baby with Charlie’s condition) and the intervention of the Pope, GOSH bowed to the overwhelming media pressure and announced that it agrees with the parents and went back to the High Court in London and asked that they be allowed to explore the treatment. The parents screamed and shouted about new research and protocols and about having a fair chance and their rights and that the risks and promise of hope were worth it.

The Gard family have already spent 11 months at GOSH, have had the benefit of a team of dedicated and expert professionals working 24/7 on their child but now they don’t want to believe what those experts are telling them. It is quite common when you are a NICU or PICU parent that you become an “expert” in your child’s condition. Dr Google and even other parents help you understand what is going on around you and then you start researching and studying everything you can get access to. While advocating for your baby or child however you have to keep listening to the doctors who are the experts.  The Gard’s statements in the High Court yesterday make it clear they have started to see themselves as more knowledgeable than the doctors around them. They seem to be caught up in that most tragic of all beliefs – the idea that there is a magic pill and if they just could be allowed to have it, everything will be “better”.

If you have a sick child, you want there to be a cure. A magic pill, special treatment or super dooper secret new piece of equipment that will mean that your sick or suffering child can be transformed back to a healthy “normal”. I’ve asked for it, I ask my daughter’s doctor for it every time we meet. I laugh and say come on, we’ve paid our dues, done the time, spent years in the hospital, surely we qualify for the magic pill now. And kind wonderful man that he is, I think I make him cry a little every time I ask.

There was/is no magic pill or cure for my own girl, a doctor at Great Ormond Street told me that 17 years ago. I had rushed around the world talked to “experts” and been told many different versions of a story that all mentioned possible and hopes but also included warnings of risks and paralysis and even death.  The doctor at GOSH sat me down and told me that he could perform surgery on her but didn’t recommend it as it was too risky.  He took hours to explain everything to me, he said it would be hard, and that there would hopefully be good days/years ahead but that I needed to be aware of everything and then be sure I wanted to take the risk.

What I discovered is that there is a big difference between British Doctors and American Physicians and it is not unlike the approach our countries take in almost everything we do. The American doctors I consulted were fast to decide that the risks were worth it and totally dismissive of the potential collateral damage (quadriplegia, ventilation, long icu stay, the extraordinary financial cost and impact on the family). For them it was all about winning.

Charlie Gard’s parents seem to be focused on the win.  If they win in the High Court and they drag Charlie to a shiny US hospital what happens then? If Charlie dies anyway do they win? If his condition is not improved or is even made worse and he is then forcibly kept alive in a US facility costing thousands of dollars a day, resulting in financial ruin or hardship do they win? Just what and how do they think they are going to win?

First do no harm requires doctors to accept that sometimes the right thing for them to do is to do nothing. It seems to me that it is time for Mr and Mrs Gard to step out of the media spotlight and accept that winning will be being there to hold Charlie for as long as they can without causing him further harm.

 

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About Sandra F

Sandra F balances her life as a management consultant, speaker and coach with her other roles as a mother to 3 amazing and extraordinary children.
This entry was posted in Children, Disability, Motherhood, News, Parents and tagged , , . Bookmark the permalink.

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