By Kathy Ostrowski, Policy & Research Director, Kansans for Life
Ten month old Charlie Gard is very sick, but he has two awesome champions–his mom, Connie, and dad, Chris, without whom he most certainly would be dead.
Charlie is not only in the unenviable position of being on life-support against the fierce opposition of his London hospital, he is also now at the center of a developing “battle royale” between the European Court of Human Rights (ECHR) and the British court system.
At stake are three essential rights for Charlie: to be kept alive, to not be imprisoned [in the hospital] without cause, and to have his health care governed by his parents. These rights are expressed, respectively, by Articles 2, 5, and 8 of the European Convention on Human Rights
The UK Courts, however, have defended what seems indefensible:
- that a hospital can hold a child hostage and overrule a decision by parents to obtain treatment elsewhere; and
- that a hospital can determine that death is in the “best interests” of a child.
Further complicating matters is the current UK position on BREXIT (the decision to leave the EU) and decades of legal chafing over British laws and “human rights” rulings that have been overturned by the ECHR.
Here is just one illustration of the swirling controversy. A hearing Monday in the chambers of the UK Supreme Court was to decide whether the ECHR instruction to keep Charlie on life support would– or even could– be followed.
The panel of three Supreme Court Justices (Hale, Kerr, and Wilson) expressed deep frustration. They said, “By granting a stay, even of short duration, we would in some sense be complicit in directing a course of action which is contrary to Charlie’s best interests.”
In short, preserving Charlie’s life was not in Charlie’s best interest.
It was then pointed out that if the UK Supreme Court refused ECHR’s instruction to maintain Charlie’s life-support, Britain could be guilty of a violation that would remove them from membership in ECHR.
Thus the UK Supreme Court’s hand was forced. It issued instructions that it would not —yet—be lawful to shut off Charlie’s life support.
But whereas the ECHR said life-support should be continued indefinitely until they issue an expedited ruling, the UK Supreme Court did set a finite shut off date–July 10.
Charlie is a virtual prisoner of the London Great Ormond Street Hospital (GOSH), but it didn’t begin that way.
In October 2016, at two months of age, he was brought to GOSH and diagnosed there with a progressively debilitating genetic condition called Mitochondrial Depletion Syndrome, or MDS. (See explanation at youtu.be.) The condition is almost always fatal and has no proven cure.
Two families of children with MDS gave moral support to Charlie’s parents, as reported in the UK Express. Brit Peter Smith strongly advocated a pioneering oral medication, called nucleoside bypass therapy which has helped his own son Maxwell.
Americans Arthur and Olga Estopian have been in constant contact with Charlie’s parents, urging that Charlie get the same bypass treatment which also saved the life of their son, Arturito. (You can read more at thesun.co.uk.)
What has not been well publicized is that after Charlie’s diagnosis, GOSH doctors themselves were open to providing the bypass medication– if their ethics board approved. GOSH recognized the new therapy as having shown some success in reversing many of the effects of MDS in sixteen patients in the United States.
HOSPITAL BECOMES HOSTILE
GOSH attorney Katharine Gollop has testified that sometime after Christmas, GOSH reversed course about the experimental medication. They determined Charlie had suffered “irreversible brain damage” and “any chance for amelioration for his condition had now gone.”
Connie claims the MRI did not back that up, but by January GOSH wanted to pull the plug on baby Charlie’s ventilator, with the ominous decree that, “every day that passed was a day not in Charlie’s best interests.”
That remains the hospital’s mantra, as repeated in several court venues. GOSH believes Charlie must be in pain and no cure exists to defend his being kept alive. To them, Charlie is literally better off dead.
Not so for Charlie’s parents, who understand it is unlikely their son will be cured, but who disagree their son is in pain. They initiated a public plea to help get him out of GOSH and to the U.S. for treatment provided by “experts” at a “reputable hospital,” according to Connie. Over 110,000 petitions were sent to the UK government in favor of “Charlie’s fight” as the campaign is called, and over 83,000 individuals worldwide made donations to create a fund of $1.78 million for the overseas trip.
When Connie and Chris went to court, the first judge, Judge Nicholas Francis, backed GOSH’s death sentence. Then the British Court of Appeal and Supreme Court backed up Justice Francis’ ruling. It was at that point that the ECHR took the extraordinary step of accepting the parents’ appeal in the interests of preventing “irreparable harm.”
As reported in the SUN Monday, Connie protests the unreasonableness of blocking Charlie from getting his last chance at help:
“…we are being blocked by one team of doctors to go to another team of doctors… other children have had this [medication], it’s natural compounds that all of us produce, it’s not harmful.”
UK courts have painted themselves in a legal corner. Reason is against them, the public is against them and now the ECHR has pounced on their authority.
Thanks in large measure to his steadfast parents, the plug has not been pulled on Charlie Gard—yet.