Courts ordered this baby off life support but his parents did the unthinkable. Meet Charlie Guard. He was born in London on August 4th, 2016, to proud parents Chris Guard and Connie Yates. At first, he seemed to be a perfectly healthy baby boy. When he was only eight weeks old though, he fell ill and his parents had to take him to the hospital. He was diagnosed with a devastating genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness. His parents had no idea they were both carriers of a faulty gene until Charlie was three months old. This disorder is so rare that it’s believed to affect fewer than 20 children worldwide. His story only begins there; what follows is the story of heartbreak, determination, and his parents’ fight for the very life of their child.
Charlie’s condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys, and brain. After watching their baby get weaker and weaker, Chris and Connie began to research his condition and found a doctor in America that might have a treatment option for him. The doctor, a neurologist who specializes in mitochondrial disorders, has treated 18 people with a similar condition to little Charlie’s with an experimental treatment called nucleoside bypass therapy. It could theoretically repair Charlie’s mitochondrial DNA and help it synthesize again by giving him the naturally occurring compounds his body isn’t able to produce. Since October 2016, Charlie has been in intensive care at London’s Great Ormond Street children’s hospital.
He has suffered significant brain damage due to the disease and is currently fed through a tube. He breathes with an artificial ventilator and is unable to move his arms or legs unaided. Although Charlie’s specific mitochondrial disorder was different than the one he was treating, the American doctor agreed to try a three-month course of nucleoside bypass therapy. The specialist proposed a therapy that he said would provide a small chance of a meaningful improvement in Charlie’s brain function. That small chance was all Charlie’s parents wanted, but it would come at a steep price.
Charlie’s parents were determined to get him to the hospital in America for treatments. They started a GoFundMe page in January 2017 to help raise money for the expensive journey. In four months, more than 80,000 people contributed, raising over 1.65 million dollars for the treatment and expenses. Just when they were starting to see some hope for Charlie’s future, another obstacle was put into Chris and Connie’s path. In April 2017, the hospital treating Charlie took his parents to the High Court. They argued that it was in Charlie’s best interest for the therapy in America not to be given and for ventilation to be withdrawn instead.
Under UK law, most decisions about a child’s treatment are made by his parents while consulting with his doctors. When there’s a serious disagreement, however, the parents or the doctors can go to court and ask a judge to decide whether treatment should be given or withdrawn. In this case, with the heaviest of hearts but with a complete conviction for Charlie’s best interests, the judge ruled that the hospital could withdraw all of Charlie’s treatments except palliative care to permit Charlie to die with dignity. Charlie’s parents have appealed his case up to the UK Supreme Court, but on June 8th, 2017, an appeal filed by their attorney was denied with the judge’s ruling that the therapy would be futile. The next day, in response to a request filed by Charlie’s parents, the European Court of Human Rights ruled that the hospital should continue to provide life-saving treatment while they examine the case.
Will Charlie ever receive his treatment? Well, here’s what’s next. On June 27th, 2017, Chris Guard and Connie Yates lost their final legal bid to take their son to America for treatment. The European Court of Human Rights sided with the specialists at Great Ormond Street Hospital and concluded it was most likely Charlie was being exposed to continued pain, suffering, and distress. The Great Ormond Street Hospital said the decision marked the end of what has been a very difficult process and its priority was to provide support for Charlie’s parents. After a long and emotional legal battle, Britain’s High Court decided that Charlie should be moved from a hospital to a hospice where the 11-month-old baby would be taken off life support and inevitably die.
Guard and Yates tried to persuade the hospital and a judge to let them say goodbye to Charlie at home; hospice was their second-best option, their attorney told a judge at a hearing. The hospital said Charlie’s invasive ventilation is a significant obstacle to his parents’ wishes. A complication could arise while he’s being moved to his parents’ home, and their front door may be too small for hospital equipment to fit through.
It was the final dispute in an acrimonious and bitter legal battle that has brought global attention to Charlie’s plight and drawn interventions from figures as disparate as Pope Francis and President Trump. Baby Charlie Guard died July 28th, 2017. The last words of the parents’ tear-filled statement were for him: “To Charlie we say, mommy and daddy we love you so much we always have and we always will and we’re so sorry that we couldn’t save him. Sweet dreams, baby.”
