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U.K. Court Weighs Last-Ditch Plea by Parents of Terminally Ill Baby

July 13, 2017 7:04 PM
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U.K. Court Weighs Last-Ditch Plea by Parents of Terminally Ill Baby

Justice Nicholas Francis of the High Court — who in April ruled that the hospital could take the baby off life support, and whose ruling has been repeatedly upheld — appeared frustrated at having to revisit the case.

He expressed dismay that the two sides could not agree on the size of Charlie’s head — a crucial question, since brain circumference indicates whether a child is growing or not. “It is absurd that the science of this case is being infected by the inability to measure a child’s skull,” he said.

Later on, the judge highlighted a fundamental disagreement over whether Charlie is suffering — medical experts say he probably is.

In the afternoon, the judge heard testimony via video link from a neurologist in the United States who has promoted an experimental therapy that he believes could help the boy, even though it has never been tried on anyone with the mutation that makes Charlie’s form of the disease — mitochondrial DNA depletion syndrome — particularly severe.

(The judge has barred journalists from identifying the neurologist, known only in court papers as Dr. I, but NewYork-Presbyterian Hospital/Columbia University Medical Center went on record last week to say that it was willing to admit Charlie as a patient or send an experimental drug to London, subject to Food and Drug Administration approval.)

The neurologist said the treatment, known as nucleoside therapy, had been shown in mice to extend life span. He estimated the chance of clinical improvement of muscle function — defined as not having to constantly use a breathing machine — at 10 percent, but he acknowledged that the estimate derived from his work with patients with a mutation known as TK2, not the rarer mutation, RRM2B, that Charlie has.

Defying the consensus of British doctors, the neurologist said he could not be certain how much structural brain damage the baby has. He admitted, however, that he had not seen the boy, or reviewed his medical records or even the extensive legal record in the case.

Pressed by Victoria Butler-Cole, a lawyer for the infant’s appointed guardian, the neurologist also acknowledged that the disease had no cure. He insisted, however, that the therapy had a small chance of improving the baby’s cognitive function — even though he told the court in April that the boy had suffered significant brain damage, and even though he acknowledged that the child’s condition had only worsened since then. (The neurologist said he may have “overstated” the damage.)

The issue has become a flash point on both sides of the Atlantic. A Washington-based anti-abortion group, Americans United for Life, said on Thursday that its president was “in London helping on the Charlie Gard case,” and that the boy “deserves a chance at life.” Some demonstrators protested outside the court. The judge warned that the hospital had received threats.

The parents’ lawyer, Grant Armstrong, insisted that the case “bristles with differences of medical opinion,” despite the consensus of the British doctors.

“Only the family, the doctors treating Charlie, and now the legal teams involved, know the details of complex issues that define his situation,” Neena Modi, president of the Royal College of Paediatrics and Child Health, wrote in an open letter on Monday.

Dr. Modi said that in Britain, the decision to withdraw life support was predicated on three factors: if treatment was “unable or unlikely to result in the child living much longer,” if treatment may prolong life but would cause unacceptable pain and suffering, or if an older child with a life-limiting illness has clearly declined treatment.

In Britain, disputes like Charlie’s rarely end up in court, but when they do, it is the courts — not the parents — that have the final say in determining a child’s best interests.

Justice Francis asked doctors to confer on Friday, and he said he hoped to issue a decision early next week.

Source: nytimes.com

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