When my daughter went to the hospital for her routine scan at 12 weeks in her second pregnancy, we wished her well but went about our normal routines. I remember receiving her phone call all too well. The baby was not developing normally and there were tell-tale signs of problems with the baby’s development. I was in a meeting at the time and promptly burst into tears, a rather unusual reaction for me.
Our daughter struggled on with the pregnancy learning more about the congenital problems with the development of the little girl’s heart. Only one side of the heart existed and everything was wired up the wrong way. On a scale of 1 to 10, this was a 10 problem which could only be cured by a heart transplant upon birth even if the baby survived to that time which was considered most unlikely. The pregnancy was now at 22 weeks before this definitive prognosis could be made. What should the parent’s do? Carry on until the child died in the womb or hope against hope for a miracle cure. Finally an agonising decision was made that the pregnancy should be terminated on strong advice that there were signs that the child was now suffering. Lucy lived for an hour after birth and then died.
These situations are heart breaking. Lucy will always be a remembered child in our family even though we never knew her and she was deprived of the ability to develop and enjoy her life. There is no doubt that the parents of Charlie Gard will feel the same sense of deprivation and loss at this tragic time. None of us knows how we would react in what are unique circumstances as every case is subtly different with difficult facts to take into account. My daughter and husband listened carefully to the advice of wonderful doctors at Alder Hey and the Women’s hospital and eventually they took the most difficult decision they will ever have to take. Charlie’s parents acted very differently, searching for alternative solutions to clutch at faint hope that Charlie might survive.
I am not here to judge Charlie’s parents. It is clear that they did not trust the advice they were given and eventually, the case came to court where the judge and the Guardian appointed to act for Charlie all took the view that the medical evidence all pointed one way and that it was in Charlie’s interests for treatment to be ended. This was despite the fact that money had been raised for treatment in the States by a doctor who had never examined Charlie, nor read his file notes.
Two years ago, Jackson Lees acted in a case where we were instructed by the wife of a terminally ill man who had been married together for 50 years. With our help, she successfully challenged the decision of a local hospital team to end treatment. Everyone agreed that the best that could be achieved by continuing to treat was a prolonging of his life for a short time. In the end, the Court of Appeal decided that for this loving couple, a few more days or weeks of life was worth the cost of the treatment and that it should continue. Social reasons for treatment trumped mere medical prognosis.
It is hard to draw any conclusions from the Charlie Gard case except perhaps that there ought to be better ways of trying to resolve these cases then that of a High Court Judge. However, if parties really cannot agree, then it is only a judge applying the law of the land that can eventually determine the outcome and I suppose we should be pleased that this is the case. It is a tribute to the legal profession that the lawyers handling this tragic case did so on a Pro Bono basis. Yes, we really do care about social issues like this. We are all human beings at the end of the day, dealing with some difficult life and death issues.