Reflections on little Charlie Gard the day before a fateful judicial hearing

By Dave Andrusko

Imagine you are Connie Yates and Chris Gard, parents of 11-month-old Charlie Gard, and after a titanic legal struggle to save your child, the presiding judge gives you only a few days to produce “drastically new evidence” why Charlie should not have his ventilator removed.

That’s what UK High Court Judge Nicholas Francis did last Friday, and reaffirmed Monday. Today is the deadline to submit the evidence.

Thursday afternoon at the Royal Courts of Justice in London, the parents will hear Judge Francis’s ruling for (or more likely against) their petition to move their son from Great Ormond Street Hospital (GOSH) to the United States for experimental nucleoside therapy.

As NRL News Today has reported in a plethora of stories, Charlie’s fate is now an international story, pitting a hospital that is totally persuaded that Charlie’s case is hopeless and that he should be “allowed to die with dignity” versus even more resolute parents who want only a chance to give their child a chance.

No one but no one denies that Charlie is very ill. He has an exceptionally rare and debilitating chromosomal condition –encephalomyopathic mitochondrial DNA depletion syndrome (MDDS)–in which his cells cannot replenish essential energy.

However a natural compound, orally administered, has shown some success as a treatment in the United States. Chris and Connie have been working feverishly since January to get their son to the U.S. to receive that alternative treatment.

New York-Presbyterian Hospital/Columbia University Medical Center and one other unnamed medical facility have offered to treat Charlie, either as an inpatient or by shipping the nucleoside therapy drug to GOSH.

Last night I stopped on my way home and re-read Judge Francis’ April 11 ruling, all 29 pages of it. All the court rulings that followed (two others in Great Britain and the European Court of Human Rights) have merely affirmed what Judge Francis found almost exactly three months ago.

Having careful considered what Judge Francis wrote, here are three thoughts.

#1. Just as Judge Francis seemed to sincerely appreciate Connie’s and Chris’s devotion to Charlie, we can agree that Judge Francis is sincere in his conclusion that it is both lawful and “in Charlie’s best interests” to have his “artificial ventilation withdrawn” and “not to undergo nucleoside therapy.”

Judge Francis says the parents are sincere but wrong. We say Judge Francis is sincere but wrong.

Hugely wrong.

Quoting from a prior decision, Judge Francis explained that while “We all believe in and assert the sanctity of human life” that “presumption is not irrebuttable” (a quote from a different decision). “The term ‘best interests’ encompasses medical, emotional, and all other welfare issues.”

Judge Francis insists he was “not applying a subjective test,” but clearly this wide-ranging definition of “best interests” guarantees subjectivity will play a role, probably a decisive role.

According to the decision, Chris had made the following powerful statement:

“We aren’t fighting because we cannot bear to lose him. He’s my boy. It’s what’s best for him. His doctors have let him seize for seven or eight hours without medication. I would do anything for him. He deserves his chance. We would not fight for the quality of life he has now. We firmly believe that he was sent to us as we are the only ones who look after him. We truly believe that these medicines will work. After three months we would want to see improvement and, if there wasn’t, we would let go. This is not the life we want for Charlie. A chance to keep fighting, he deserves that chance. We are doing this for him.”

#2. The judge relies heavily on the fact that the treatment proposed for Charlie “has not even reached the experimental stage on mice let alone been tried on humans with this particular strain of MDDS.” Utterly true. No one is denying that.

The parents respond, however, that Charlie is not suffering (the hospital and Judge Francis grudgingly concede they can’t prove that he is) and that there has been success in treating “a ‘first cousin’ condition” to Charlie’s. Why not give Charlie a chance at managing his symptoms better and extending his life?

#3. Charlie’s and Connie’s and Chris’s drama has engaged a world-wide audience of people fiercely committed to giving Charlie a chance.

  • Over $1.7 million has been raised online to help with the costs.
  • Hospitals are volunteering to take Charlie in and treat him.
  • Pope Francis and President Trump have tweeted their support.
  • Two members of Congress have “proposed legislation to grant lawful permanent status in the U.S. to Charlie Gard and his family, so they can at least pursue their best hope for Charlie.”

The whole world is watching, Judge Francis, who, unfortunately, has dropped a few hints he doesn’t appreciate mere citizens and office holders expressing their opposition to his ruling and support for Charlie.

Keep Charlie and his parents in your prayers. And pray that Judge Francis clearly, fairly, objectively look at evidence that supports the parents’ desire to help their child.