I suspect most of you have heard about Charlie Gard. I know that as a family with a child with a complex medical condition that we have been following it closely, I have read the facts, and I have watched the heart wrenching YouTube videos from his parents, Chris Gard and Connie Yates. I am not religious but I have prayed for a miracle for the family and in his final hours I have hoped that there was a sudden change of plan and that the family could achieve a good death. A death which is dignified for Charlie and allows the family to say goodbye in a way which they want, a way in which will help them to be able to spend the time with their baby doing the things that most get to take for granted just as sleeping in his own cot, holding him in their arms and letting him know that he is loved and for afterwards to spend the time they need with him in the environment of their choosing.
What ever your thoughts on if treatment should have been allowed to happen or not the whole situation is incredibly sad. As a parent I have fought when at the back of my mind there is the knowledge that this fight may not be in my child’s best interests and that I am being selfish in my continuing to fight, at a time when my child was in pain and on large levels of medication to manage his pain and in an induced coma as a result. I am one of the lucky ones our story had a happy ending and whilst Oliver has challenges he is a happy little boy who is no longer in pain. In hindsight I know that I made the right decisions but hindsight is a wonderful thing at the time it was gut wrenching and the most painful time of my life. I cannot imagine the pain of being given hope by a doctor and pinning all dreams for the future on that hope to be unable to give it a chance. When a child dies its not just the child that passes away but all of the parents hopes and dreams for the future for Charlie’s family ultimately they will be feeling that they didn’t manage to try everything possible.
If we were in the situation where their was no hope left I can only pray that I would be strong enough to let him go but I know as his mum I would want to know that I have done everything in my power to try and Chris and Connie have worked so hard to do this.
The situation is heart-breaking. For me however the bigger tragedy here is that the parents final wishes of being able to take him either home or to the hospice have also been denied when previously this was an option. It may be that we, the public do not know the details that have caused this change but to have that last little bit of control stripped away resonates with me as I am sure it will for many families as being one of our biggest fears.
I also feel for the medical staff who have had to make this decision, who train and dedicate their lives to saving children to have to intervene and withdraw the support maintaining life cannot be easy but I am a firm believer that the family should be involved in all the decisions and from the parents view points this has not happened as they would of brought him home otherwise. Often parents feel helpless when their child is dying, the aim of palliative care is to give the child the best possible quality of life, sometimes it is essential for the child to remain in hospital for symptom control but to not allow Charlie to die at home with his family seems a particularly cruel twist of fate.
A quick time line of what has happened in Charlies short life.
4th August 2016 Charlie was born and everyone presumed he was a healthy baby.
September 2016 he was diagnosed with mitochondrial DNA depletion syndrome, a condition which causes progressive muscle weakness and brain damage for which there is no cure.
January 2017 an American doctor gives the family hope in the form of a trial therapy in America called nucleoside and fundraising starts.
2nd April 2017 the family meet the goal of raising 1.2 million pounds to pay for Charlie’s treatment and transport in America.
3rd April the High Court started to consider whether his parents should be allowed to take him to America for the treatment of if his life support machines should be turned off.
11th April 2017 the High Court judge ruled for his doctors to turn off the life support machines.
25th May 2017 the Court of Appeal upheld the ruling to remove Charlie’s life support.
8th June 2017 Three Supreme Court justices rejected a fresh challenge by Charlie’s parents.
13th June 2017 Judges in Strasbourg said the life support should remain on until the 19th June.
27th June 2017 Judges in the European Court of Human Rights rejected a plea to intervene in his case
30th June 2017 Today is the day that Charlie’s life support is due to be removed not at home surrounded by his family as per their wishes but in Great Ormond Street Hospital.