by Rhys Drout
Children’s lives: every aspect is contested, from abortion to education, and the future of the next generation is constantly at the forefront of international discussion. But in the spring of 2017, the tragic story of Charlie Gard and his parents’ fight became a media sensation. His death brought up a much larger question: how much government control of a child’s life is too much? Charlie was born a seemingly normal baby, but his parents soon noticed that he was not developing at a normal rate. Charlie was diagnosed with infantile onset MDDS, a condition that caused rapid muscular degeneration and brain damage. This led to him having to live in the hospital, being fed via a tube and needing a respirator to breathe. By crowd-sourcing funds, his parents wished to bring him to the US for an experimental treatment. While it likely would not have been curative, the treatment would have allowed doctors to test a remedy for the condition and potentially make advances to help other infants in the future. Because the treatment would not necessarily have improved Charlie’s condition, British doctors barred the family from taking him to America, which is when the ultimately futile legal battle ensued. The Great Ormond Street Hospital decided that Charlie should be taken off life support and moved to palliative care, to ease any potential suffering as he died. Charlie’s mother accused the hospital of hiding records that showed that her son's brain damage was, at the time of trial in a High Court, reversible. This fact would have been compelling evidence to let the child travel to the United States for treatment. In early June after multiple appeals, Charlie’s case eventually reached the Supreme Court of Great Britain where they could no longer prove that the experimental treatment would have worked. Therefore, the baby’s life support was shut off. Prominent figures, including the Pope and President Trump took a stand against the British court’s authority to determine a patient's “best interest.” The Pope, based on Catholic teachings, argued that even those that are permanently disabled deserve the the same moral care and protection of the law, and that doctors are meant to preserve life and comfort. This sentiment struck a chord with many, as petitions with thousands of signatures were signed in support of getting Charlie his treatment. To many people, the idea of having a parental decision transferred to a hospital was horrifying. The ability of a court to decide “best interest” of an infant seems inappropriately impersonal in comparison to the compassion of his own parents. They wished to do their best to give him any shot at life, and the fact that there now seems to be precedent for a ‘line’ where life is no longer worth preserving is shocking. The repercussions of this case could be drastic. From the perspective of many Americans, the parents’ right to retain custody of their child and decide his treatment seems like the obvious one. Since Charlie could obviously not consent, in the US the decision of his consent to either stay on or be removed from life support would be in the hands of his legal guardians. However, the fact that the European Court of Human Rights ruled in the hospital's favor shows the international disparity in policy. By allowing doctors the ability to override loved ones’ wishes for those on life support, there is large potential for other decisions to ‘pull the plug’ without familial consent. While the doctors’ argument to take him out of his pain does make sense, it is ultimately the failure to give him a chance at life that deeply disturbed the international community. By creating this international conversation, many countries have been forced to think hard about what it means to give doctors autonomy over the end of a patient's life. This ability to take control away from the patient and their family makes one question how much government control should really be allowed. Life or death decisions made in a courtroom have always been contentious, and Charlie’s story just shows a new facet of this issue. From the standpoint of United States citizen, Charlie’s parents should have had the right to decide what they thought was right for their son. When astute medical advice is given from multiple experts, I believe that it is important both for a parent’s mental well-being and also for their ability to exercise their individual rights for that parent to have the ability to make the final decision about their own child’s well being. Once this power is in the hands of the government, rights of the individual become infringed upon and the delicate balance of power shifts too far away from the citizens of a nation.