Hospital: Charlie Gard’s Parents Shouldn’t be Allowed to Take Him Home to Die

LifeSite News ^ | 7/25/17 | Claire Chretien

[exDemMom]

Second, though of course I have not read all the threads on this, I have not seen people making ill-founded claims that a different therapeutic approach could “save” Charlie in the sense of correcting his multiple handicaps and restoring him to pristine health. The aim all along was to slow the disease process and see if he had any chance to make some developmental gains.

It is clear, both from the parents' statements and from the various supporters/protesters that they believe a miracle cure was withheld from Charlie. I have not seen where Charlie's parents were begging for something that would prolong his life and give them more time with him.

In fact, the statements of the parents all along suggest that they do not understand the severity of Charlie's disorder. I wonder if any of this would have happened had Charlie had a disease that was familiar to his parents--maybe an inoperable brain tumor? Would they have insisted on giving him some laboratory concoction that has barely even been tested in cell culture, much less advanced to clinical trials.

No, the underlying issue was whether the parents, with private funds and donated services, could seek non-NHS medical treatment. It would have saved the NHS a bloody fortune if they had said “YES” six months ago.

It is not accepted practice in the US to give patients early prototype drugs that have never reached advanced testing. Money is not the issue. It is unethical and unthinkable. There are plenty of conmen who are happy to take money and promise a cure, but legitimate ethical medical people don't do that. Researchers like myself know very well that people--including children--are dying without the drugs that we are trying to develop. But I don't know anyone who would give anyone an untested prototype.

I think that Dr. Hirano might have gotten in over his head with this, honestly. I've read reports that he never applied to the FDA to test this unproven chemical mixture on little Charlie--which suggests strongly that he never expected to actually conduct this test. He made some irresponsible statements--such as claiming that there is a 10% chance that the "treatment" would improve Charlie's muscle tone, or a 56% chance that it would cross the blood brain barrier (BBB). On what basis did he come up with those percentages, since there has been NO experimentation with any kind of prototype drug in cells from a patient with this disease? Also, it is impossible to determine without testing whether a drug will pass the BBB. This is not a trivial issue.

I read recently that the judge commented that he could have saved a lot of trouble by disallowing any expert testimony from anyone who had not actually examined the child. Had that been the case, Dr. Hirano either would have had to come examine Charlie months ago (back in December, I believe), or not provided the testimony that convinced the parents that he had a cure for Charlie.

One last comment: in most cases that end up in court because a family cannot accept a medical staff's determination that continuing to treat their loved one is futile, the court tells the family that they are free to move their loved one to another facility that will accept the sick patient. In most cases, the family cannot find another facility because the experts look at the case history and see that the treatment is futile. In the Charlie Gard case, this happened. But the mother found Dr. Hirano, and took his statement that he would be willing to treat Charlie as a promise that he could cure Charlie.