American Neurologist to examine Charlie next week

Timetable pushed back until at least July 25 for possibly removing Charlie’s ventilator

By Dave Andrusko

Charlie Gard

Charlie Gard

In all the accounts yesterday of the emotion-packed hearing over the fate of little Charlie Gard, little attention was paid to the fact that UK High Court of Justice Nicholas Francis had asked an American neurologist if he would be willing to come to London to examine Gard. The only reference to “Dr. I’s.” response was that he seemed to be reluctant to do so.

But, as they say, that was then and today we’re told not only the doctor’s name– Michio Hirano–but that Charlie will be evaluated by the Columbia University Medical Center neurologist next Monday and Tuesday. And that Charlie’s ventilator, which the hospital is determined to unhook post-haste, will not be removed until at least July 25 when Justice Francis says he hopes to have a decision whether he will allow Connie Yates and Chris Gard to take their child to the United States for experimental nucleoside therapy.

Further good news. Dr. Hirano, who specializes in myopathies and other neuromuscular diseases, will “meet with his current immediate care team and other specialists, including a doctor from the Vatican children’s hospital. Charlie’s mother, Connie Yates, fought to attend and was given permission,” according to the Associated Press.

That latter point is very important. The couple has been outspoken in their criticism of the London’s Great Ormond Street Hospital (GOSH) for not keeping them in the loop.

Yesterday Dr. Hirano (identified previously only as “Dr. I”) testified via video conferencing. CNN summarized his testimony in this fashion:

On Thursday, Hirano told Justice Nicholas Francis that the baby’s MRI scan did not necessarily indicate structural damage to the brain. He said there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment. Hirano added that keeping Charlie on a ventilator would not cause him harm because he did not seem to be in any significant pain.

He added that he expected a “small but significant” improvement in Charlie’s brain function.

The most telling sentence in all the coverage came in the CNN story:

The Great Ormond Street Hospital told the court their position remains unchanged…

Charlie, now 11 months old, suffers from an exceptionally rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy. However a natural compound, orally administered, has shown some success as a treatment in the United States. That is Dr. Hirano’s work.