Firstly, this is not just me putting my 2 pence worth in to the debate. I do have some personal experience I can draw upon when it comes to a child with a life limiting condition. It’s not the same, of course, but there are similarities. My first child, Amy, died from Tay Sachs Disease. If you don’t know the story you can read all about it here.
When we were told she had a terminal genetic condition I already knew, like Charlie’s parents, that something wasn’t right. She had already suffered brain damage. If someone had offered me a treatment that would halt her decline, would I have taken it? I’m not sure. We were told there was no hope, no cure. I did look for possible advances, and part of me hoped and still hopes that in my lifetime there will be a cure. Unfortunately, the damage starts in the womb for most of these genetic abnormalities that affect every single cell in the body, so unless you know before even conceiving that the child will be affected and start treating then, it’s impossible to have a completely normal child. Why would you knowingly conceive a child with such a diagnosis?
So it brings up the question, about quality of life. When we got Amy’s diagnosis, she was 13 months old, she already had brain damage, she couldn’t sit unaided or stand, she was having difficulty swallowing so she could only eat pureed food, she was having seizures, she had visual and hearing impairment quite severely, and suffered from constipation. She couldn’t grasp objects. If we could have halted it there, would we? I remember looking up about experimental treatments, and there were some claims that some treatment had slowed the onslaught of the disease but to me that just prolonged the agony. All we could do was make her comfortable. If she had been on a ventilator and we had the option to turn it off, I would have.
I don’t know enough about the treatment and what it involoves, but from my understanding, the treatment cannot be curative, only prolong his life. At the moment, Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, he has been deaf since birth and has a severe epilepsy disorder. His heart, liver and kidneys are also affected. Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided. In addition to this, Charlie’s eyelids cannot stay open and his eyes point in different directions because of muscular weakness. According to the GOSH website, Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Several doctors, including the US doctor proposing the treatment, agree that his brain damage cannot be reversed.
Knowing this, and having had my experience seeing my child suffer multiple seizures, the pain of several chest infections and probably lots more she couldn’t tell us, I think they should let him go. We didn’t have that option, I watched her decline further from that day of diagnosis for another 2 years until she died. I do think they should be allowed to transfer him to a hospice or home to die, but there may be further issues with that which I’m not aware of. Certainly they can take him home once he passes, he doesn’t have to be in a morgue or funeral home, this I know. He could even have a ‘cold cot’ which would preserve his body until the funeral. We were lucky Amy died in a children’s hospice, and she was able to stay there in a special temperature controlled room until the funeral. That control was so important to me, so I can understand their emotions here.
We’re all different in how we cope with difficult situations, and when your child is involved it upsets the natural order of things. I don’t think that Charlie’s parents are wrong in what they have done, but I do think it’s time now to stop campaigning and let him go. The latest development has been President Trump getting involved for his own political or misguided reasons, it’s nothing to do with him, several courts have all come to the same conclusion and he has just complicated things. How can the hospital now insist on withdrawing life support when everyone and his wife has an opinion? Including me, I know.
The only thing I don’t understand is that why the treatment can’t be brought over and performed here – I haven’t been able to gather from searching what the treatment involves, it appears to be a medical infusion – if so that could be administered without any distress at his bedside. If they’ve raised the money couldn’t they pay for the doctor to be flown over and perform the treatment? Then they will have tried, even though I believe it won’t work. I know it’s never that simple, nothing ever is.
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