Friday, July 14, 2017

Charlie Gard’s Parents Endure Volatile UK Court Hearing


By Kathleen Ostrowski, Kansans for Life
National Right to Life


A decision whether Chris Gard and Connie Yates, will be allowed to take their rapidly failing son Charlie to the United States to obtain experimental treatment will be held off at least another day or two after a hearing this afternoon in the UK High Court of Justice Nicholas Francis.

That hearing was not without fireworks and a dramatic exit by the parents who vehemently insisted their views had been misrepresented by Justice Francis.

No final court ruling is expected for days, for at least two reasons:

1) further measurement of Charlie’s head–to verify/repudiate brain loss– was ordered to be provided tomorrow. The hospital is insisting that there has been no growth in the size of Charlie’s skull over the past three months since Justice Francis gave the hospital permission to disconnect Charlie’s ventilator. The parents say flatly that is not so.
2) an interdisciplinary panel is now to be convened immediately to attempt to bridge the gap between what the hospital is contending and what the parents and other outside experts on their side are saying.
Charlie is very ill. He has 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. Chris and Connie have been working feverishly since January to get their son to the U.S. to receive that alternative treatment.

New York-Presbyterian Hospital/Columbia University Medical Center and one other unnamed medical facility have offered to treat Charlie, either as an inpatient or by shipping the experimental nucleoside therapy drug to London’s Great Ormond Street Hospital (GOSH). But GOSH insists that the therapy has only worked on a variant of Charlie’s condition and would be pointless, if not also painful to the eleven month old child.

COURT VOLATILITY

Justice Francis emphasized going in that Thursday’s proceeding was focused solely on new medical developments relevant to Charlie’s current status.

GOSH had requested the hearing after British Prime Minister Theresa May told Parliament she was confident the hospital would not ignore new developments. GOSH subsequently acted to request this hearing after receiving two letters – one from seven doctors and another from an attorney representing Charlie’s parents – claiming the chances of the treatment being successful were higher than previously thought.

Grant Armstrong, the parents’ lawyer in today’s hearing, presented testimony from medical experts that the chances were between 90 and 100% that the treatment being sought in the U.S. could “cross the blood-brain barrier” with as much as a 60% chance of Charlie experiencing muscular improvement, and “meaningful brain recovery.”


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