UK appeal court weighs releasing Charlie Gard for US therapy

By Kathy Ostrowski, Policy & Research Director, Kansans for Life

Charlie Gard

Charlie

Three UK Court of Appeal judges heard arguments today in the case of whether a baby boy on life support will be released from the hospital to obtain experimental therapy in the United States.

Justices Andrew McFarlane, Eleanor King and Philip Sales are expected to issue a ruling Thursday in a case reviewing a decision against the baby’s parents made April 11 by High Court Justice Nicholas Francis.

Imagine yourself in this drama, as the London parents, Connie Yates and Chris Gard.

After their son Charlie was born healthy in August, they brought him to the Great Ormond Street Hospital [GOSH] for care in October. After establishing a diagnosis of a rare and incurable disease, GOSH then prevented them from taking their failing son overseas for a “last chance” experimental treatment!

Parents stateside have watched a related development as Scott and Sheryl Crosier led a crusade to stop DNR orders from being placed on children without parental notice and consent. Their 3-month-old son, Simon, with Trisomy 18, was denied resuscitation and died. The Kansas legislature heard multiple stories of medical bias against medically fragile children. “Simon’s Law” was enacted in April by resounding margins.

Britain has no such hospital decision-making protection for parents. After Charlie’s parents tracked down a potential new therapy, they launched a GoFundMe campaign –in January– to raise funds for the expenses of taking their baby overseas, with this plea:

“We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America.”

Over 80,000 members of the public responded generously to pledge over $1.5 million to cover Charlie’s expenses… yet GOSH will not let Charlie leave the premises!

For months Charlie’s parents pleaded that they did not think their son was in pain. They insisted “their fight was not them ‘being selfish’ in keeping Charlie alive but about exhausting all options for potential treatment.”

CHARLIE DETERIORATES WHILE CONFINED IN LONDON

Today, according to various UK news reports, GOSH attorneys doubled down on their position. They told the Court of Appeal judges that Charlie “cannot see, hear, make a noise or move,” that it is “hard for anyone to know whether he is pain,” and that further treatment would leave him in a “condition of existence.”

In essence, the hospital asserts the parents are unreasonable to pursue a treatment, cannot tell if they are causing Charlie pain and there’s no “meaningful” reason for Charlie to stay alive.

It is now five months since the funding campaign was started by Charlie’s parents, desperate to get him to the U.S. to be involved in experimental “nucleoside bypass therapy.” They acknowledged that while it was a move that had limited scientific basis to repair Charlie’s mitochondrial depletion syndrome, it would assuredly aid in the research to help others in the future.

It is hard not to see that Charlie Gard’s deteriorating condition is due in no small part to the stubbornness of a hospital unjustly asserting control– “usurping the parental function” in the words of the parents’ attorney today in Court.

Followers of Charlie’s saga scratch their heads and say why has the hospital insisted –against the parents’ wishes—that Charlie be removed from life support and “die with dignity?”

The Court of Appeal will have the final word Thursday.