The picture above is my daughter who fought for her life in 1994 at Great Ormond Street. The doctors did all they could to save her life. Each day we watched more and more drugs pump into her body. We watched her body puff out and her skin change to a deep yellow. We watched her eyes swell to glass marbles. After 9 days and numerous scans we agreed to allow the doctors to switch her life support machine off. It was the most agonising experience I have ever been through. Like Charlie Gard our baby had so many things wrong with her. She was born with a genetic condition. It was the first one of its kind.
This week Great Ormond Street hospital went back to the high court for a further ruling on the agonising case of Charlie Gard, the 11-month-old baby with an extremely rare neurodegenerative disorder which has left him with terrible brain damage, unable to move, and suffering from severe epilepsy. The baby’s parents have appealed to allow him to travel to the US for treatment for which they have crowdfunded the money. They are understandably desperate to try anything that might give him some quality of life. Great Ormond Street Hospital believes there is no treatment available that has any chance of success. It is because hospital and parents disagree about what is in Charlie’s best interests that the courts have got involved.
The story has become a global sensation and for parents like me who have been through a similar experience it hits a particularly sore nerve, conjuring memories of very painful images of our children suffering and yet not being able to do anything to help.
My thoughts are with Charlie’s parents but if I was in their shoes I think I would accept the diagnosis and put my faith in the doctors. Great Ormond Street is an incredible hospital with phenomenal expertise, care and support. As agonising as it is I think that sometimes we just have to pass life over to nature to take its course. We cannot always control life and death and shouldn’t try to. We need to put more faith in the medical profession, but instead our faith seems to be slipping away and the public now believe that parents are the sole arbiters of what is in the child’s best interests.
We live in the 21st century and somehow falsely believe that technology and medicine can reverse any death situations. It never will, in every case. To prolong Charlie’s life is to prolong his suffering and the parents’ suffering. It also presents false hope to other parents battling in similar situations. Time doesn’t necessarily heal loss but we can learn to adjust and through these painful life experiences we end up stronger. There will be light at the end of the tunnel for them. There was for me. I now have three beautiful children and while I will never forget my first child, for she will always be in my heart, I am recovered from the ordeal and I am glad that we allowed her to slip into a peaceful sleep, her suffering no more. If she had lived our lives would have been so different. I probably would not have had any more children because my life would have been focused completely on hospital appointments and her care and I don’t think it would have been a good life for her. You may think I’m cruel, but sometimes we have to be cruel to be kind, as the old adage goes.