U.S. expert 'fails to get Charlie Gard's doctors to reconsider'

Posted July 20, 2017

In a gesture of solidarity with 11-month-old Charlie Gard, a committee in the U.S. House of Representatives just approved an amendment granting Charlie and his parents permanent residency in the United States.

Gard and his family have been at the center of an worldwide debate over whether governments can make life and death decisions for individuals. About a month ago, the European Court of Human Rights ruled that the hospital can remove Charlie's life support and allow him to die.

Charlie Gard has been granted US Citizenship after an American doctor arrived in the United Kingdom to assess him at Great Ormond Street Hospital. Then again, Gard's case is so unusual, with the hospital fighting his parents to let him die, that the number of families overseas who can claim they're similarly situated may be very small.

His mum Connie Yates says he responds to them, watches videos and enjoys tickles.

However, doctors say it has been tested on mice and patients with a different mitchondrial condition and has brought about "dramatic clinical improvements". A judge is now reviewing Charlie's case, and is expected to give his ruling next week.

Mitochondrial DNA depletion syndrome is a progressive disease that causes muscle weakness and loss of motor skills, leaving those who have it unable to stand, walk, eat, talk and eventually breathe.

Doctors at London's Great Ormond Street Hospital said transferring the baby to a USA hospital would prolong his suffering.

Hirano, testifying by video from the U.S., told Justice Nicholas Francis on Thursday that he did not think Charlie necessarily had brain damage and that he believed there was an "11% to 56% chance of clinically meaningful improvement" to the baby's muscular function if treatment were pursued.

Mr Justice Francis has considered the couple's latest claims at preliminary hearings in the Family Division of the High Court in London. We are at his bedside and feel satisfied he is not suffering or in any pain.

Doctors caring for Charlie at the London hospital unanimously agree that it would be best for him to have his ventilator withdrawn and allowed to die, according to the hospital.

Last night Miss Yates said she and Charlie's father Chris Gard were "so grateful to Dr Hirano and the other clinicians for coming to see Charlie".

She added: 'Our gorgeous baby boy is still stable.

But what his parents call a miracle appeared in the form of a pioneering experimental treatment called nucleoside therapy.

"For the goal of this visit, this gives them the same status as our own clinicians and allows them both to examine the patient and to have full access to our records and facilities", a statement said. They now want the Great Ormond Street Hospital for Children in London - where Charlie has been staying since October and where he is currently on life support - to release their child back into their care.