In court testimony, U.S. doctor offers sliver of hope for terminally ill British baby Charlie Gard
The parents of Charlie Gard were back in court Thursday to try to persuade a judge to allow them to bring the terminally ill British baby to the United States or Italy for experimental treatment.
At an emotionally charged hearing, an American doctor testified over a video link that there was new clinical evidence suggesting the 11-month-old boy, who suffers from an extremely rare genetic condition, might improve with the treatment.
The London facility that has been caring for Charlie since October, Great Ormond Street Hospital for Children, obtained a court order in April allowing doctors to remove life support because they don't think the treatment will help and could cause the boy additional pain and distress.
Britain’s Court of Appeal and the Supreme Court of the United Kingdom agreed with the decision, and the European Court of Human Rights in Strasbourg, France, declined to take up the case last month. But when hospital officials were contacted by tw o other facilities willing to take over Charlie’s care, they agreed to return to the original court to give the judge a chance to reconsider.
The case has become an international cause celebre for its mix of heartbreak and complex ethical and legal considerations. President Trump and Pope Francis have tweeted their support for Charlie’s parents, Connie Yates and Chris Gard, who are both in their 30s. Evangelical Christian and antiabortion groups in the U.S. have also taken up the family’s cause.
But Judge Nicholas Francis cautioned at a preliminary hearing Monday that he has to decide the case “not on the basis of tweets but on the basis of clear evidence.†Under British law, when disputes arise between docto rs and families about a course of treatment, it is left to the courts to decide what is in the best interests of the patients â€" especially when patients can’t speak for themselves.
Charlie suffers from an inherited condition known as infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, which has left him with severe brain damage and unable to move or breathe on his own. In a statement submitted in court Thursday, the London hospital said “he has no quality of life and no real prospect of any quality of life.â€
But the American doctor, who cannot be identified because of a court order, said he was willing to administer a treatment known as nucleoside therapy that has shown some promise with children with another form of mitochondrial depletion.
Although he has not had a chance to evaluate Charlie in person, or to read his complete case file, the doctor said he believed there was at least a 10% chance of improvement to the boy’s muscle function. He could not say whether the treatment, which is not a cure, might improve Charlie’s brain function or allow him to be taken off a ventilator.
The judge asked the doctor whether he would be willing to travel to London to meet Charlie and his medical team, to which he agreed. The judge then asked lawyers for both sides to work out the details with their clients and report back to him Friday.
Francis cautioned, however, that he did not want the case to drag on in perpetuity, because a small boy’s life was at stake.
It has been a long, emotional journey for Charlie’s parents, who have complained repeatedly that their rights as parents have been stripped away. They have raised more than $1.7 million and are willing to pay for their son’s treatment themselves.
In court Thursday, they looked pale and exhausted. When the judge suggested at one point that they had acknowledged that their son’s quality of life was not worth sustaining in its current state, they abruptly left the courtroom, leaving behind a small stuffed monkey belonging to the boy.
“We didn't say that he's suffering,†his mother said.
But the couple appeared more upbeat during the doctor’s testimony. Yates blew kisses at the video monitor and her husband saluted the screen.
At the end of the daylong hearing, a family friend read a statement on the couple’s behalf, saying they had rushed back to their son’s bedside.
“Let's pray that British justice that is known throughout the world for being fair, for being decent, for being compassionate, comes through for baby Charlie,†the statement said.
Twitter: @alexzavis
Special correspondent Boyle reported from London and Times staff writer Zavis from Los Angeles.
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UPDATES:
3:45 p.m.: This article was updated with staff reporting, including details from the doctor’s testimony and reaction from the family.
This article was originally published at 10:20 a.m.
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