A recent ruling out of Europe’s Court of Human Rights stated that a hospital has the right to take a child diagnosed with an uncommon genetic condition, off life support. This ruling coming amongst a long-fought battle from parents to keep their infant son alive.
Baby Charlie Gard came into this world last August, where doctors found the child had a condition referred to as mitochondrial DNA depletion syndrome. The rare disease is a result of genetic mutation, which causes organ dysfunction and weak muscles, and provides a terrible prognosis for most who suffer from it.
Since October, the baby has remained at London’s Great Ormond Street Hospital for Children and was on life support. Doctors had wanted to discontinue life support, however Charlie’s parents (Connie Yates and Chris Gard) have not wanted this. What they had wanted, was for the hospital to release the child to them, so that they could try experimental treatment in the U.S.
Yates and Gard took their case to the UK Supreme Court, but lost an appeal. The baby, 10 months old, was to be taken off life support on June 13th, end of day. Charlie’s parents approached the international court, located in France, referred to as the European Court of Human Rights, to review their case.
This court initially offered an extension of one week for life support, however, an additional three weeks was granted to provide for a more thorough decision, until July 10th. Still, that extension ended with the recent decision from the courts.
As per the British Medical Association, UK law states that parents have a right over consent around medical care and treatments. Still, these are not absolute, and when it comes to those times were doctors and parents are not on the same page, court’s may be brought in to offer an unbiased decision on what the best interests of the child might be.
Unfortunately, Charlie’s condition has deteriorated significantly since birth. His brain was affected and he was unable to move legs or arms, or breath without help. Based on that information, the court decided to have his life support switched off, alas his parents appealed this and headed to the Human Rights court in France. But, they too ended up deciding that taking Charlie off life support, was the best in this awful situation.
CNN reported that the child’s parents were hoping to take Charlie to America, where a physician agreed to conduct experimental treatments on him, known as nucleoside bypass therapy. This is an oral medication that could offer the baby organic-occurring compounds his system could not produce.
Still, the court’s decision was a carefully-thought one where doctors and xperts were brought into the discussion. In a statement they released, the court relayed that it was likely the baby would be exposed to more suffering, pain, and distress via this experimental procedure, thus the reasoning behind the judgement that was brought down.