Congressman Jeff Fortenberry

Representing the 1st District of Nebraska

Fort Report: Guarding Charlie Gard

Jul 23, 2017
Fort Report

Charlie Gard, an 11-month-old baby who lives in London, is one of only 16 people in recorded medicine to suffer from a rare genetic condition called MDS (Mitochondrial DNA Depletion Syndrome). MDS is a series of disorders that cause tissues to experience a major drop in mitochondrial DNA, which causes sufferers to generate insufficient energy to their kidneys, muscles, and brain. The disease usually occurs in infants and is typically fatal, though some live into their teenage years.

Earlier this year, Charlie’s parents were informed by English courts that Charlie’s life support machine must be turned off, arguing that it would be cruel to attempt to extend his life without a realistic chance of recovery. The European Court of Human Rights refused to intervene. Hundreds of thousands of Brits signed a petition asking that Charlie’s heartbroken and anguished parents be allowed to take him to the United States for treatment. An experimental medical intervention has helped other children with a similar condition, though, for Charlie, the hope might be small. The High Court will deliver a final verdict early next week on whether Charlie’s parents can even make the potentially life-improving trip.

Just looking at Charlie’s picture evokes a deep sense of sympathy for him. He is a beautiful and tender child. There is deep and wide sympathy in America for his plight. Partially as a result of that concern, this past Tuesday, the House Appropriations Committee, on which I serve, passed an amendment with bipartisan support to grant Charlie and his family permanent resident status in the United States so that Charlie can get the medical care his parents want for him. While this amendment requires more steps to become law, it expresses the disposition of Congress that each person and family has certain preeminent rights—including the right, founded in reason and love, for these parents to pursue the best possible outcome for their child.

There are multiple issues at stake here. The most prominent is this: who controls? Is it the court system? A state-run medical bureaucracy? Or the parents, with widespread community support?

Right now, Charlie is on the verge of being sentenced to death. His parents are fighting for his life. If they immediately transport him to the States, they will be charged with child endangerment, a contradiction so glaring that it defies reason. Most people understand intuitively what is at stake, thus the outpouring of support from all over the world. Over a million pounds has been raised online for his care.

A highly specialized professor of neurology at Columbia University, Dr. Michio Hirano, and a colleague flew to see Charlie in the United Kingdom on Monday. They concluded that the MRI scan of Charlie indicated no damage to his brain and that he was not currently in pain. According to these experts, there is an "11% to 56% chance of clinically meaningful improvement" in Charlie’s muscular functioning with their proposed treatment. Unfortunately, British specialists emphatically insist that Dr. Hirano’s experimental drug protocol will not work and that Charlie should be taken off life support. The dynamics of this case reveal the crux of the philosophical issues surrounding health care choice, resources, and human rights.

There are many sick children all over the world—with many suffering parents--who will never receive such attention. Yet, Charlie is in front of us now. I know what it is like to have a baby hooked up to multiple tubes and wires. Many parents must quietly grieve as complex medical crises confront our sense of wanting to do all we can. Charlie's struggle evokes a feeling of solidarity against the danger of rigidity in state-run ethics. As our committee work concluded this week, I received this note, “Dad, thanks for trying to help little Charlie.”