Charlie Gard’s Parents Are Forced to Stop Fighting for their Dying Baby | Marianne March   2 comments

I cannot imagine the pain Charlie Gard’s parents are feeling now, as they savor their last moments with their precious child. Charlie is 11 months old and he’s dying.

Source: Charlie Gard’s Parents Are Forced to Stop Fighting for their Dying Baby | Marianne March

Charlie Gard's Parents Are Forced to Stop Fighting for their Dying BabyChris and Connie have been fighting for months to get treatment for Charlie, ever since he was diagnosed with a rare genetic condition, mitochondrial DNA depletion syndrome. But they have been forced to give up that fight.

I can’t imagine their pain, but I can imagine their fury because I share it.

From the Hospital to the Courts

No further recourse was available in the UK, but an American doctor was ready to try to help him.

Charlie is not mine. I’ve never met him or anyone who knows him. Yet I am furious with the British government for refusing to allow his parents to take their dying son to the United States for treatment: a therapy trial, his last and only hope.

No further recourse was available in the UK, but an American doctor was ready to try to help him at Columbia University Medical Center. Charlie’s parents raised £1.4 million through crowdfunding; they had the money to take him to the US by air ambulance.

But doctors at Great Ormond Street Hospital in London didn’t like that idea. They said it wouldn’t help, that the American therapy was experimental. They said the baby’s life support should just stop.

On April 11th, a British High Court judge ruled with the doctors, empowering them to turn off Charlie’s life-support machines. His mother screamed “no” when she heard the verdict.

There was a petition with more than 110,000 names on it. People wrote letters to the Prime Minister, calling on her to release Charlie from Great Ormond Street’s care. The pope said he was praying for Charlie’s parents, “hoping that their desire to accompany and care for their own child to the end is not ignored.”

And now Charlie is out of time.

Even US President Trump tweeted that “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”

Charlie’s parents challenged the decision in the Court of Appeals, the Supreme Court, and the European Court of Human Rights.

All to no avail. The Courts would not allow them to try to save their baby’s life.

Who Can Call This Justice?

And now Charlie is out of time. According to the BBC, “US neurologist Dr. Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.”

It’s possible that Charlie’s doctors were right, that experimental treatment wouldn’t have helped (although his parents don’t think so, nor do American and Italian doctors). But what harm could it have done when he’s dying anyway? And if his parents had the means to give him one last chance, why shouldn’t they exercise their right to do so? They belong to Charlie just as he belongs to them, and no one but Chris and Connie should get the final say on his medical care.

This is outrageous. And it’s wrong.

I never really knew what people meant by the phrase “death panels” before. It was just a term bandied about by talking heads and political personalities. It’s chilling how well it applies in this instance: a group of bureaucrats that sits around deciding who is worthy of medical care.

I don’t know how the power slipped away from the individual, whether taken by force or given away with applause, but this is outrageous. And it’s wrong.

Read with a Box of Tissues

I will leave you with the words of Connie Yate’s, Charlie’s mom:

Due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him.

We want people to realise that we have been speaking to parents whose children were just like Charlie before starting treatment and now some of them are walking around like normal children. We wanted Charlie to have that chance too.

All we wanted to do was take Charlie from one world renowned hospital to another world renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease. We feel that we should have been trusted as parents to do so but we will always know in our hearts that we did the very best for Charlie and I hope that he is proud of us for fighting his corner.

Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain.

Despite the way that our beautiful son has been spoken about sometimes, as if he not worthy of a chance at life, our son is an absolute WARRIOR and we could not be prouder of him and we will miss him terribly. One little boy has brought the world together and whatever people’s opinions are, no one can deny the impact our beautiful son has had on the world and his legacy will never ever die.

We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his 1st birthday in just under 2 weeks’ time, and we would ask that our privacy is respected at this very difficult time.

Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.”

2 responses to “Charlie Gard’s Parents Are Forced to Stop Fighting for their Dying Baby | Marianne March

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  1. Poor Charlie is at peace now.


  2. This is not a reply to any comments on this post. It’s my clarifying my own position on it.

    When I received this link from my friend Kate, I didn’t really have an opinion on this (beyond my reflexive “it should be the parents’ choice, not the government’s), but Kate has brought me to a place where I do have an opinion. I believe in the right of adults to direct their own treatment or to decide for themselves to end it. I am reluctant to give doctors any say in the matter because I believe it violates the Hippocratic Oath to help their patients’ kill themselves. If I want to end my life to spare everyone my terminal illness, that’s my choice. If my doctor wants to end my life to spare everyone my terminal illness, that’s murder.

    But I’m an adult. What about when it is a child? Shouldn’t doctors and government officials make a “rational” choice in the child’s best interest when the parents are clearly unwilling to accept the inevitable?

    No! Again, that’s murder. Doctors in England are government employees and the government doesn’t (nor should it) own the child. Bureaucracies don’t love. They couldn’t care less what happens to us and they especially don’t care what happens to “useless eaters” – disabled children who will never be able to join the employment slavery class, earning tax dollars for the government to steal.

    My friend Kate sent me the link to the article I posted and then to the article I’ve posted below.

    Kate’s son was severely brain-damaged as a toddler. He lived to be 20. She spent 18 years taking care of him and she says she doesn’t regret a day of it, but in the early days when her son was on life support, doctors advised her and her husband to “let him go”. They refused and the kid lived. It was their choice to make, not the doctors or a bureaucrat’s.

    As for Charlie Gard —

    “Treatment was available, the parents had the means to utilize it and yet the British doctors totally ignored the Hippocratic oath and refused treatment until it was too late for the treatment to work. They violated the rights of the parents to decide what happened to their child and acted as if he belonged to the government rather than to them. It’s really like something out of Nazi Germany or the old Soviet Union, where the “useless eaters” were killed for the “greater good.” What happened to Charlie Gard is the death panels Sarah Palin warned about and they’re coming to this country if we allow government anymore control over our medical care. For the record, we would have given anything to participate in a treatment that had even a slim hope of improving Danny’s life.” Kate

    My cousin Rick who is a research doctor for multiple sclerosis patients points out that his colleagues used to have the same ethical discussions in the early days of his career … whether it was right to keep terminally-ill patients who could not be cured alive. It was completely against the law in the US back then to pull the plug. Nowadays, “terminally ill” MS patients are treated and their useful lives are extended for decades. It doesn’t cure them, but it does save their lives. The same with a whole host of diseases that once were considered death sentences – muscular dystrophy, cystic fibrosis, cancers, and many others. That was accomplished because they were able to “experiment” on those earlier patients.

    So not only did the doctors and bureaucrats fail to allow the Gards their basic rights as parents, but they denied future sufferers of this disease the hope of an improved treatment.

    “Their moral and ethical crime is not just against one family, but against humanity. ‘Do No Harm’ doesn’t mean ‘kill the patient so they stop feeling pain.’ Unfortunately, that’s what happens when doctors become bureaucrats and bureaucracies decide we don’t own ourselves or our children.” Rick

    Finally, I ran into my friend Phyllis whose son was diagnosed in a vegetative state for five years. In the early days after his stroke, the doctors wanted to withdraw life support, which would have killed him. His wife said “no”. When she gave up hope, she divorced him rather than demand his feeding tube be removed and his parents refused when they became guardian. Mike lived because his parents (and even his ex-wife) loved him. American doctors with the means to discover that he was conscious insisted he should be allowed to “die with dignity”, but they were wrong and thank goodness it wasn’t their choice to make.. A new “treatment” came along (had actually existed, but was finally tried by a new doctor) and it was discovered that, at least for the prior three years, Mike had been conscious, just trapped inside his body by damage in his brain stem. With a method of communication, Mike was able to thank his parents for not giving up on him, bringing him home for Christmas, bringing his daughter to visit him, etc. What’s more, since it was now known that a thinking human being existed in there, they were able to get therapy for him. It’s been another 10 years. Mike lives at home with his parents now. He’s still wheelchair bound and he’s pretty slurry when he talks, but he can feed himself and roll around the house under his own power. He paints and writes poetry and he edits books for independent authors … making more money at that than I make selling the books. His daughter got married last month and he “walked” her down the aisle. Thank God American doctors have to be given consent before they can kill their patients.

    I’m not saying Charlie Gard could have been cured. The treatment, if started early enough, might have arrested the damage and allowed him to live very much like the boy in the other article does. Is that a life worth living? Maybe not. I’m not saying it is. I’m saying Charlie’s parents had a RIGHT (which does not come from the government, but is inherent in being a parent) to choose potential life for their child and it was murder for government officials (even with MD after their names) to take that RIGHT away from them. It wasn’t their choice to make, nor should it ever be.


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