Parents of Terminally Ill Baby Have 48 Hours to Find Evidence Experimental Treatment Could Help

Image via AP.
Image via AP.

Charlie Gard is a terminally ill baby who cannot see or hear with significant brain damage that keeps him from breathing, eating or moving on his own. Charlie’s parents have been forbidden from taking him to the US for experimental treatment, based on evidence from the hospital and doctors, a decision upheld by the European court of human rights. Now, after interference fro the Pope and Donald Trump, his case is being reopened.


The Guardian reports that on Monday, Charlie’s parents, Connie Yates and Chris Gard, were given 48 hours to produce “drastic new evidence” that sending him to the US would help Charlie. The court will reconvene to hear the evidence on Thursday.

Justice Nicholas Francis, who rejected the parents’ requests to move Charlie in April, says he would be “delighted” to change his mind, but added, “I have to decide this case not on the basis of tweets, not on the basis of what might be said in the press, or to the press.”

The Great Ormond Street Hospital applied for the new hearing after receiving a letter signed by seven doctors from the Vatican children’s hospital asking them to reconsider, and a letter from the family’s solicitor.

Charlie’s condition is caused by a rare genetic mitochondrial condition, and a US doctor performing “nucleoside treatment” has said there is a 10% chance of it working on Charlie, at a conservative estimate. This will, of course, not cure or reverse the brain damage his condition has already caused him to suffer.

Meanwhile, two US Republicans, Reps. Brad Wenstrup (OH) and Trent Franks (AZ), have proposed giving Gard permanent residency in the US for his treatment. Both are in favor of the Republican health care bill that would strip insurance from millions of American citizens.

“Only the family, the doctors treating Charlie, and now the legal teams involved, know the details of complex issues that define his situation,” said Dr. Neena Modi, president of the Royal College of Paediatrics and Child Health, in a statement to CNN. “These issues—unknown to us and all those voicing opinions—will have been considered very carefully in reaching any decision. This is why interventions by external agencies or individuals, no matter how well-intended, are unhelpful.”

Contributing Writer, writing my first book for the Dial Press called The Lonely Hunter, follow me on Twitter @alutkin



I don’t understand how they can prohibit the parents from taking the child to another hospital for treatment? If the place they are just wants to unhook the kid anyway, why wouldn’t they let the parents take a chance and try whatever this US hospital wants to offer?

It’s heartbreaking and I know the issue is very complex. BUT I think a hospital basically forcing a family to end a life - even if it is a life hooked to machines - is grossly unethical.

For the record, I’m pro choice, I believe in right to die legislation, i personally have a living will and have honored close family member’s request to do not resuscitate. so I’m not just some crazy person who is going on about every life blah blah.

but really... if they want to fly their baby to US and try something to hope against hope... HOW IS THE GOVERNMENT allowed to stop them? I could see if the reason was the baby would die on the way, but they basically just want to unhook the baby.

This is maddening.