By Kathy Ostrowski, Kansans for Life Policy & Research Director
Charlie Gard, a little baby on life-support with a debilitating genetic disease, has lost his last court battle. His parents’ heroic battle to bring 10-month-old Charlie to the United States for an experimental medication has lost out to a London hospital evaluation that he deserves “death with dignity.”
A majority of seven judges in the European Court of Human Rights (ECHR) Tuesday rejected, as “inadmissible” the plea by Charlie’s parents to overturn three rulings in the UK court system against their son. The ECHR had agreed to intervene June 19th to maintain Charlie’s life-support in the interest of preventing “imminent risk of irreparable harm.”
However, in its ruling, the ECHR “endorsed in substance” the approach by the UK courts and “consequently… considered that it was appropriate to lift the interim measure” which had required doctors to continue providing life support treatment to Charlie.
The ruling was described as “final” and the full document will be released today.
No official statement has yet been found from the UK Supreme Court, which—due only to the ECHR intervention– had extended legal protection for Charlie’s life support through July 10.
BBC health correspondent Fergus Walsh said it is likely Charlie’s life support machine will be turned off within a few days following discussions between the hospital and his family.
Charlie entered Great Ormond Street Hospital in London in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.
The ECHR wrote that the UK courts had concluded, “on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”
Charlie’s parents, Connie Yates and Chris Gard, repeatedly rejected the assessment that Charlie was in pain, or that their intended overseas trip would inflict pain.
A spokeswoman for Great Ormond Street Hospital said: “Our thoughts are with Charlie’s parents on receipt of this news that we know will be very distressing for them. Today’s decision …marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps. There will be no rush …to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”
STATE USURPS PARENTAL ROLE
The main argument offered by the hospital to countermand parental authority was to protect Charlie’s “best interests.” However, attorneys for Charlie’s parents argued that the hospital was basically holding Charlie hostage, violating several articles under the European Convention on Human Rights, including the rights to life, liberty and family privacy.
However, the British Medical Association views parental decision-making authority over healthcare treatments for their children as not absolute.
“Where doctors believe that parental decisions are not in the best interests of the child, it may be necessary to seek a view from the courts, whilst meanwhile only providing emergency treatment that is essential to preserve life or prevent serious deterioration.”
Dr. Melissa Moschella, a Catholic University of America philosophy professor, warned the Catholic News Agency that Charlie’s situation
“reflects a euthanasia ideology …that says human life is valuable only if it meets certain capacities….It seems to me completely wrongheaded that the state should be stepping in here when the decision that the parents are making is really aimed at the best interests of the child…It’s not crazy, it’s not abusive, it’s not neglectful. It’s the decision of parents who want to, however they can, to give their very sick child a chance for life.”
There are no media reports yet of any response from Charlie’s parents to Tuesday’s tragic ECHR ruling.
Connie and Chris had already indicated that if Charlie did “not get his chance,” the $1.78 million pledged for his U.S. trip would go towards a charity for mitochondrial depletion syndrome (Charlie’s condition).
“We’d like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.”