Officials at Great Ormond Street Hospital in the United Kingdom, who have recommended that life support for 11-month-old Charlie Gard be withdrawn so that he dies, now have tried to exclude his parents from a meeting that could very well decide his future.
WND has reported all week on the fight going on over the future of the sick child.
Charlie suffers from a rare genetic mutation of mitochondrial DNA depletion syndrome. He reportedly has brain damage, is blind and deaf, and needs a ventilator to breathe.
Britain’s High Court has ruled that Great Ormond Street Hospital, where Charlie is being treated, should take him off life support and let him die.
But the parents have raised more than $1.8 million to bring Charlie either to the U.S. or to Rome for treatment, and want permission from the government to take their son out of the U.K.
WND reported on Thursday that during the early part of a court hearing, Charlie Gard’s parents, Chris Gard and Connie Yates, stormed out because the judge claimed they had said they wanted to maintain their son’s condition as it was, something they denied saying.
But they returned a short time later and the judge eventually asked an American doctor, testifying via long-distance, whether he would be available and willing to come to the U.K. to begin treatments on Charlie.
The Mail reported the parents erupted again on Friday, when doctors at the hospital said they wanted to have a discussion about Charlie’s future among just themselves – excluding the parents.
Chris Gard shouted “He’s our son,” and Yates shook her head angrily at the idea.
It is Dr. Michio Hirano of Columbia University Medical Center in New York, an expert in the child’s condition, who has agreed to travel to the U.K. for an evaluation.
He then will meet with U.K. officials to discuss his prognosis.
Lawyer Katie Gollop representing the hospital wanted the parents out of the room for that discussion, but failed, and Charlie’s mother, an expert in the disease herself from caring for Charlie, will be allowed to be present.
The judge said he expects to make a decision whether he will order the death of Charlie, or allow treatment, on July 25.
The Mail reported the judge’s effort to obtain an evaluation from the American physician was “the first significant sign the judge may be thinking again about his ruling that Charlie must be left to die”
Charlie’s parents took their case public a shortly time ago after having multiple courts rule against their attempt to obtain treatment for their son.
Subsequently, both the pope and President Trump took to social media to express support for the parents.
Charlie’s parents and legal representation contest the court’s claim that Charlie is suffering, has structural brain damage, and his condition cannot be improved. The court claims that he should be taken off life support and offered no treatment.
Catherine Glenn Foster, president of Americans United for Life, was present at Charlie’s hearing. She said claims of brain damage are unproven.
Foster said “the medical evidence is consistently clear that Charlie deserves a chance at life.”
“There is much misinformation about Charlie’s condition, but he shows no signs of being in pain and experts say that alternative treatment has a chance of improving Charlie’s quality of life,” Foster said. “It is unacceptable that Charlie’s parents are being asked to prove that their son’s life is still worth fighting for when it is their right as parents to pursue what they consider best for Charlie.”
The judge, who earlier said it would be better for Charlie to die, said he would change his mind if there is evidence of a chance for him to live, according to the Guardian newspaper of London.
Foster is currently in Britain to assist Charlie’s parents. She believes that the medical evidence in Charlie’s favor is overwhelming.
“We have letters and invitations from doctors and specialists from around the world and medical evidence that shows that Charlie could greatly benefit from this ground-breaking treatment. Charlie’s parents have been seeking this treatment since November – it is now July – time is of the essence,” she said.
She pointed out the judge and the court are being asked only to “give Charlie this chance.”
A petition is circulating concerning Charlie’s condition, with just under 500,000 signatures, at Citizengo.org.
Bobby Schindler, the brother of Terri Schindler Schiavo, told WND this week Charlie’s case is not being handled correctly. He’s president of the Terri Schiavo Life & Hope Network.
Schiavo died in 2005 after a court ordered removal of her feeding tube and water at the request of her husband. Since then, Schindler has devoted himself to defending medically vulnerable people.
“Because of the nature of their fight, and the day to day uncertainty whether their child will live or die, [Charlie’s case is] reminiscent of my family’s fight to save my sister, Terri,” Schindler told WND.
Schindler believes Charlie’s struggle is vitally important in the larger struggle of parental rights against encroaching government influence in end-of-life decisions.
“I think it’s obvious to any normal observer of the news surrounding Charlie that this is a simple case of fit and competent parents being denied the right to care for their son, and an aggressive medical and legal system intent on imposing its will rather than empowering the weak and vulnerable – in this case, Charlie and his parents,” he said.
“Once these types of decisions are enshrined into its precedent – the notion, as we are seeing in Charlie’s case, that parents are not fit to determine how best to care for their son – people realize that the same thing could happen to them, and that it has literally been stated that it’s in Charlie’s best interest to die.”
Schindler sees a disturbing rise in cases like Charlie’s, which he attributes to cost-cutting initiatives.
“We currently live in a health-care system that is hyper-focused on controlling costs in terms of providing treatment,” he said. “The problem, it seems to me, is that decisions are now made on the premise that instead of providing long-term ‘costly’ care, it is much cheaper to deny care, especially if the hospital decides that the treatment is not going to have much success.
“Sadly, since we established the Terri Schiavo Life & Hope Network after Terri died, we are seeing an increase in situations like Charlie’s, which are often described as medical futility-denial of care cases,” Schindler continued. “Undoubtedly, with rising concerns in the costs, and bioethicists and ethics committees making quality of life judgments, persons need to understand the potential risks they may face and the real possibilities of being denied wanted, needed and helpful treatment.”
Schindler warns that people should learn more about their own medical rights, in case a situation like Charlie’s or Terri’s should ever happen to them.
“It is especially important today to know your rights as a patient,” he said. “Not only if you are admitted to the hospital, but whomever you appoint as your health-care surrogate that they know your rights, in the case you don’t have the capacities to make medical decisions yourself. It could be the difference whether you receive the care you need.”
WND reported earlier this year on the 12th anniversary of the death of Terri Schiavo. The media and her husband, Michael Schiavo, asserted Terri was in a “persistent vegetative state,” but her parents and brother, Bobby Schindler, insisted otherwise, claiming she was able to swallow, laugh and express love for her family.
In 1990, Terri, at age 26, collapsed in her St. Petersburg, Florida, home for a reason that still hasn’t been explained and was taken to a hospital by first responders who feared she was dead. She was comatose for a time, then started responding and was moved to a care center. Her family members say she was getting better before her court-ordered starvation.
WND has been reporting on the Terri Schiavo story since 2002. Read WND’s unparalleled, in-depth coverage of her life-and-death fight, including more than 150 original stories and columns.