Dying baby should enter the US for health care, lawmakers say, as health bill fails | McClatchy Washington Bureau

It’s become obvious over the past few months that Congress agrees on little when it comes to health care. But members can apparently rally around health care when it comes to an 11-month-old baby living or dying.

A committee in the U.S. House of Representatives passed an amendment Tuesday that could allow 11-month-old Charlie Gard and his parents to legally establish permanent residence in the U.S. so the dying baby can receive health care.

Gard has mitochondrial DNA depletion syndrome, a rare disease caused by a genetic mutation. It leads to weakened muscles and organ dysfunction as sufferers do not get energy in parts of their body such as their brain, kidneys and muscles. There is no known cure.

His parents, Chris Gard and Connie Yates, have been fighting to keep their child alive. They now want the Great Ormond Street Hospital for Children in London – where Charlie has been staying since October and where he is currently on life support – to release their child back into their care. A doctor in the U.S. who visited Charlie said he would be willing to perform an experimental treatment that offered a “small but significant” chance of improvement, according to the Daily Mail.

But parental rights are not absolute when it comes to medical treatment under British law. Hospital officials have been trying to gain permission from a court to cut Charlie’s life support, and a court granted that permission in June, according to CNN.

“The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit,” a press release from the court announcing the decision said. Charlie’s life support was scheduled to be turned off June 13 after they lost that appeal.

Gard and Yates then filed a request with the European Court of Human Rights, an international court based in Strasbourg, France, which has extended the deadline.

The House committee approved a bill with the amendment on Tuesday, but it has not yet gone in front of the full House and there has been no word from the Senate. President Donald Trump has tweeted his support for the family.

Even if the U.S. government allowed the Gards to receive medical treatment in the U.S., the hospital would also have to grant the parents permission to take their baby. Hospital officials have maintained that Charlie has “no quality of life and no real prospect of any quality of life,” and prolonging his death is causing him undue suffering, according to the Daily Mail.

Dr. Michio Hirano, a neuroscientist at the Columbia University Medical Center and a leading expert on Charlie’s condition, has been tested on a limited number of patients and none with Charlie’s type of disease, according to the BBC. Hirano has said even if the treatment worked it would not reverse the brain damage Charlie has already sustained. But the parents are determined to try.

“We strongly feel as his parents that Charlie should get a chance to try these medications,” Gard and Yates wrote on their on their campaign website, Charlie’s Fight. “He literally has nothing to lose but potentially a healthier, happier life to gain.”

Meanwhile, the U.S. Senate failed again Tuesday to pass any health care legislation to repeal or replace Obamacare. House legislation to replace Obamacare passed in early May, after an earlier failed attempt.

The timing of the vote on Charlie’s citizenship and the Senate’s failure to garner support over its health care proposal was not lost on Americans.