Trump Vows To Help Charlie Gard, The British Infant Courts Say Should Be Allowed To Die

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President Donald Trump and the Vatican have spoken out in support of Charlie Gard, a terminally ill British infant whose case has captured worldwide attention after European courts decided that he could be removed from life support against his parents’ wishes.

Pope Francis said on Twitter that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.” The Italian news agency ANSA reported Monday that officials at a Vatican-owned Italian hospital will ask their counterparts at London’s Great Ormond Street Hospital whether 10-month-old Charlie can be moved from that facility to Rome.

On Monday, Trump tweeted about the case, writing that the United States “would be delighted to” help.

If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

– Donald J. Trump (@realDonaldTrump) July 3, 2017

It’s unclear how the U.S. government would be able to assist.

 

Charlie, who will be 11 months old on July 4, has a rare genetic condition and resulting brain damage that has robbed him of his ability to move his arms and legs, eat or even breathe on his own.

British courts decided that the boy should be allowed to die after a heartbreaking legal battle in which doctors asserted that the child had no chance of survival. His parents argued that there was an experimental treatment in the United States they had not tried.

The case was taken all the way to the European Court of Human Rights, which declined to hear the matter last week, upholding previous court rulings that it was in Charlie’s best interest to withdraw life support.

Charlie’s story swept the globe as his parents, Chris Gard and Connie Yates, expressed devastation that they had no say in their son’s life or how and when he would die. They appeared on video late last week, sobbing and saying their son would be removed from life support Friday and would take his last breaths at the hospital.

“He’d fight to the very end, but we’re not allowed to fight for him anymore,” Gard said in the video statement. “We can’t even take our own son home to die.”

The parents said the hospital would not give them time to let family members say goodbye. When asked about those claims, the hospital said it could not comment on specific details in the case.

But Friday, the parents said doctors at Great Ormond Street Hospital had decided to postpone Charlie’s removal from life support.

“We have been in talks today with Great Ormond Street and they have agreed to give us a little bit more time with Charlie,” Yates told the Daily Mail. “We are really grateful for all the support from the public at this extremely difficult time. We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”

A spokesman for Great Ormond Street Hospital for Children NHS Foundation Trust confirmed in a statement to The Washington Post that the hospital and Charlie’s parents were “putting plans in place for his care, and to give them more time together as a family.” The hospital also asked for privacy for the hospital and the family “at this distressing time.”

Monsignor Vincenzo Paglia, president of the Vatican’s Pontifical Academy for Life, issued a statement Friday, saying that the situation has “meant both pain and hope for all of us.”

“We feel close to him, to his mother, his father, and all those who have cared for him and struggled together with him until now,” Paglia said in the statement, according to Vatican Radio.

He also noted the “heart-rending pain of the parents” in trying to determine what is best for their child.

“The proper question to be raised in this and in any other unfortunately similar case is this: What are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine,” he said. He added that, “Likewise, the wishes of parents must be heard and respected, but they, too, must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone.”

Charlie was born in August with a rare genetic condition called infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS, according to court records.

England’s National Health Service describes the condition this way:

“The term depletion refers to the markedly decreased amount of mitochondrial DNA found in muscle, liver and brain tissues in these disorders. These are severe disorders presenting in early infancy or childhood with profound weakness, encephalopathy, seizures and liver failure.”

Weeks after birth, Charlie was struggling to hold up his head and was not gaining weight. At the two-month mark, he had become lethargic, and his breathing had become shallow, according to court records.

Charlie was transported to Great Ormond Street Hospital, where he has been ever since.

Earlier this year, doctors concluded that nothing more could be done for the terminally ill infant. Charlie’s parents pushed back, arguing that there was an experimental treatment in the United States.

Charlie’s mother wrote on a GoFundMe page several months ago that she and Charlie’s father had hope:

“After endlessly researching and speaking to Dr’s all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn’t been tried on anyone with his gene before (he’s only number 16 in the world ever reported) but it’s had success with another mitochondrial depletion syndrome called TK2 which is similar – it’s helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.”

Great Ormond Street Hospital went to the courts with this question: Was it legal, and in Charlie’s best interest, for the hospital to remove the child from life support – even against his parents’ wishes?

In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts” that the therapy could not repair structural brain damage.

“Transporting Charlie to the USA would be problematic, but possible,” he wrote. “Subjecting him to nucleoside therapy is unknown territory – it has never even been tested on mouse models – but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”

He said it was “with the heaviest of hearts but with complete conviction for Charlie’s best interests” he decided that the hospital could withdraw treatment, except for palliative care, to let Charlie “die with dignity.”

An appeals court, then a supreme court, upheld it, according to the National Review.

After the European Court of Human Rights issued its decision Tuesday, Great Ormond Street Hospital said it marked “the end of what has been a very difficult process.” But the hospital said in a statement, “There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”

(c) 2017, The Washington Post · Lindsey Bever 

{Matzav}

2 COMMENTS

  1. The European Courts did not, as the article said, rule that Charlie should be “allowed” to die. It ruled that Charlie must die. That his parents had no right to try to save him. This is the issue of euthanasia writ large; the courts decided that since the quality of his life would be so poor even if he survived, kill him.

  2. Since transporting the baby is so risky, is it possible to have someone deliver and administer the drug to where he is now, and train staff or medically trained volunteers for continuing treatment? This might solve that particular problem, and maybe the actual illness.

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