Charlie Gard is dying. Will he die from mitochondrial disease or because the doctors turned off his life support? His parents have been fighting in the courts for months to keep their baby alive and they have lost their last appeal. According to the family’s Instagram account as of writing this the doctors have permission to end life support but are allowing the family a bit more time.
This is a horrible diagnosis for anyone. It should be met with support and education for the parents by the medical team. However in Charlie’s case things soon became contentious rather than supportive. The hospital and the parents sharply divided when someone at the hospital decided that “every day that passed was a day not in Charlie’s best interests.” to be alive that is.
His parents are loving and by the looks of the pictures on social media religious. They didn’t agree that all medically possible avenues had be investigated. They wanted to do what parents all over the world do everyday love and care for their child as they the saw fit. The hospital didn’t agree and neither did a series of courts.
From the National Review, The Court-Ordered Killing of Charlie Gard
There is no doubt little Charlie is sick. Given what I know about mitochondrial disease and how it takes but doesn’t give, he will die. Does that mean he will die tomorrow? The next day?
No person knows. That is in God’s hands.
The top doctors in mitochondrial research and care are working as fast as possible to create treatments and stabilizing medications. There is hope. (in a sad aside this week the top minds in mitochondrial disease and families with mitochondrial disease are meeting in DC to find a cure and treatments!)
When the body is supported he could live longer, possibly another month. What a precious month that would be for his parents and him. YES, him. Charlie could feel the warm touch of his mother’s kisses on his cheeks. The scruff of his father’s beard as he snuggles him. We don’t know.
I would hope if I fall into a state in which I cannot respond my family would fight for me. Would remember my wishes and follow them. Since Charlie is so small the people making the decision on how long and hard to fight are his PARENTS.
Not the doctors or judges.
To give some perspective here you might be thinking little Charlie must be suffering. Not necessarily. If a caring hospice team helped the parents care for him in a comforting setting he and the family could be quite comfortable and able to deal with the medical side of things in a less intrusive setting. Wouldn’t you like to say good bye to your child in a place of peace and healing?
As for the medical devices, I can easily speak for the feeding tubes or TPN given. It doesn’t hurt. The nutrients go in and support my system. I even get my hydration through central line which again doesn’t hurt but I feel better with it. I feel less nauseous, less muscle pain when hydrated and ‘fed’ properly. The withdrawal of feeding and liquids cause pain and less alertness.
As for the ventilator, it is used by many people across the country every day successfully. Helping to keep oxygen levels up. Helping to prevent patients from feeling the lack of being able to breath. That is a base level fear for us all. Why would the hospital deliberately choose to do this to Charlie?
The hospital, doctors, and courts have all decided that it is in Charlie’s best interest to remove his life support. It has been reported on the family’s Instagram account that they are not allowing the family to take him home on hospice to die there. They are not even allowing the parents the decision of when to stop life support.
How did human life become so cheap and easy to just turn off?
Please join me in praying for Charlie and his family.
*We have talked about this before with another assisted suicide story. Choosing Dignity When Dying