UK hospital refuses to let Charlie Gard’s parents take him home

Betrays hospital public statement that there was no rush

By Kathy Ostrowski, Policy & Research Director, Kansans for Life

In a heartbreaking Youtube posting today, Charlie Gard’s parents said life-support for him ends tomorrow and that the Great Ormond Street hospital [GOSH] will not allow them to bring Charlie home to die.

Chris Gard and Connie Yates said 10-month-old Charlie, who suffers from a form of mitochondrial disease which causes progressive muscle weakness, will die Friday, “knowing he was loved by thousands.”

The parents have battled since January to take Charlie to the United States for an experimental treatment that has helped other patients with this condition. GOSH was at first supportive of that treatment, but reversed their position in January, claiming, in effect, that Charlie was so brain damaged as to be beyond anything but pulling the plug on his respirator.

In the somber video, Charlie’s devastated parents revealed that they had talked with GOSH, and–contrary to the hospital’s official press statement yesterday about their being “no rush”–Charlie “will die tomorrow.” Chris bemoaned that they are not even allowed a delay to the weekend, so that Gard relatives can travel to be there.

According to Connie, since November, when GOSH began discussing Charlie’s palliative care/death, Connie and Chris always expressed their intent for him to die at home. The other options were for Charlie to die at GOSH or at hospice, but Charlie’s mom insists that in all of the many discussions about palliative care, they had always said their choice was to have their baby spend his final hours at home.

The Guardian reports that in a Facebook post on Thursday, the couple said they were spending their “last precious hours” with their son. “We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies,” they wrote. “We and most importantly Charlie have been massively let down throughout this whole process. Charlie will die tomorrow knowing that he was loved by thousands … thank you to everyone for all your support.”

Tuesday, the European Court of Human Rights (ECHR) refused to take up an appeal by Charlie’s parents against the UK Supreme Court, which ruled that Charlie must stay in GOSH and have his life-support removed to “die with dignity.” Ironically, the UK supreme Court in 2012 and ECHR in 2015 have both refused to issue a right to assisted suicide (“die with dignity”).

The fact that Charlie’s parents were prohibited from taking Charlie out of hospital to travel to a new set of doctors in the United States has more than baffled the public, it has outraged them. Over 83,000 people internationally have pledged $1.78 million to cover the overseas trip expenses.

The outpouring of support for Charlie Gard and his family did not hold sway with courts. Euthanasia, and government control of decisions that properly belong to the family are at the heart of this tragedy. An incisive article about this comes from Matt Walsh.

Charlie’s heroic parents are at the breaking point, with this comment, “Not only are we not allowed to take our son to an expert hospital to save his life, we also can’t choose how or when our son dies.”