Charlie Gard: A Painful Battle for the Right to Life

Healthcare“In Rama was there a voice heard, lamentation, and weeping, and great mourning, Rachel weeping for her children, and would not be comforted, because they are not.” Matthew 2:18 (KJV)

What does it mean when government takes control of our health care system? It means bureaucrats, courts, and government-directed health care providers possess the power to decide life or death for the most vulnerable people in our society: children (especially the unborn), seniors, and individuals with disabilities—especially those who have been medically compromised.

Background:

You have likely heard about young Charlie Gard, who was born with a serious (and very rare) genetic condition: mitochondrial DNA depletion syndrome (MDDS). A few months after his birth, Charlie was transferred to Great Ormond Street Hospital (GOSH) in London and given a highly negative prognosis.

Charlie’s parents sought to avail him of a promising, experimental treatment—nucleoside—in the United States, Italy, or even exported to the United Kingdom. Despite more than $1.5 million in private funds having been donated to provide for his potential treatment, GOSH refused to allow Charlie to be given the treatment or transferred from their facility to be treated elsewhere. Worse, the hospital decided he should be denied respiratory and nutritional life-support and given palliative care only, functionally sentencing Charlie to death.

When Charlie’s parents appealed the hospital’s decision, three successive courts in England (including their Supreme Court) denied Charlie the right to be treated. The barrister (lawyer) the British government appointed to “advocate” for Charlie, Victoria Butler-Cole, also serves as the chair of the pro-death group Compassion in Dying. The European Court of Human Rights similarly rejected an appeal to intervene regarding Charlie’s treatment.

In light of intense national and international attention on the case, including additional information from medical facilities in the United States and Italy and a threat of “judicial review” if it ignored “new evidence,” GOSH returned to the courtroom. The judge, Mr. Justice Francis, ruled that American neurologist Dr. Michio Hirano would be allowed to examine Charlie.

A Heartbreaking Decision:

After consulting with Dr. Hirano, Charlie’s parents, Chris Gard and Connie Yates, decided to end their legal fight. In a court statement from both parents, Charlie’s mother read:

The American and Italian team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week. He's not brain dead (and never has been). He still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie's muscles have deteriorated to the extent that it is largely irreversible and, were treatment to work, his quality of life would now not be one which we would want for our precious little boy. They both agreed that treatment should have been started sooner.

There is one simple reason for Charlie's muscles deteriorating to the extent they are in now—TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy. . . . 

Our doctors in America and Italy were still willing to treat Charlie after reviewing the MRI head scan from July 2017 as they still felt that there was a chance of meaningful improvement in Charlie's brain. However, due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him. . . .

Charlie had a real chance of getting better. It's now unfortunately too late for him, but it's not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain.

Our Fight for Life:

The most fundamental right of a person, at any stage, is life itself. At the NCLL, we believe in the value of every person’s life as created in the image of God—regardless of geography, mental state, or physical circumstance.

As the attorneys for Terri Schiavo’s family, David Gibbs and Barbara Weller know personally what a toll these legal battles take. But they also know without a doubt that God has called them to stand in the gap for such a time as this and to speak for those who cannot speak for themselves.

Throughout the ongoing battle to defend life in the courts, in Washington, DC, and in state houses, we have seen encouraging victories and heartbreaking setbacks. We fought hard for Terri Schiavo’s right to life, and we continue to fight for the vulnerable and the innocent whose lives are under threat. (More than a decade after Terri’s passing, her brother, Bobby Schindler, went to London to bring awareness and give insight and encouragement to the parents of Charlie Gard.)

As we fight for life in the institutions of power, we are always mindful of the battle for the hearts and minds of our fellow citizens. As we speak truth in court cases, committee hearings, and in the media, our goal is to honor God by protecting His precious gift of life.

Continue to pray with us that eyes would be opened and hearts would be changed as we spend ourselves to protect the innocent, like Charlie Gard.