During the last two weeks, a 10-month-old British baby boy has garnered the world’s attention, even gaining words of support from leaders like the Pope and President Donald Trump.
The boy, Charlie Gard, is terminally ill and has brain damage stemming from a rare genetic condition called mitochondrial DNA depletion syndrome. The disease causes weakened muscles and organ dysfunction, and comes with a poor prognosis — life expectancy is anywhere from 3 months to 12 years after the onset of symptoms, according to the National Institute of Health.
Charlie has been in the intensive care unit at the Great Ormond Street Hospital for Children since October, and his doctors plan to take him off life support, despite his parents wishes. While the boy’s parents wanted their to take their son to the U.S. for an experimental treatment, and had raised money to do so, the UK Supreme Court agreed with the hospital and decided that taking the infant off life support was best. The experimental treatment, according to the Washington Post, would not cure his condition or improve the boy’s quality of life. The parents appealed to the European Court of Human Rights, based in France, who also agreed with the doctors.
The news has caused a public outcry around the world, both in support of the parents and in support of the doctors. On social media, some have pointed at Britain’s socialized, universal healthcare as “killing” the infant, while others have defended the hospital’s decision since the child has terminal disease and brain damage.
On July 2, Pope Francis called for the parents of the baby, who is in a hospital in London, to be allowed to “accompany and treat their child until the end.”
On Monday, Trump also tweeted his support for Charlie’s parents.
“Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation,” said Helen Ferre, director of media affairs at the White House, according to the Washington Post. “Although the president himself has not spoken to the family, he does not want to pressure them in any way, members of the administration have spoken to the family in calls facilitated by the British government. The president is just trying to be helpful, if at all possible.”
Charlie’s life support was scheduled to be turned off on June 30, but the hospital announced, at least at press time, that it was working with the parents to allow them to spend more time with their son before he dies.
My heart goes out to the Gard family. I’ve followed the family’s journey online through Instagram. When I see pictures of that baby boy in footie pajamas, with tufts of blonde hair and chubby cheeks peeking out behind the medical tape on his face, I don’t just see a baby boy. Charlie, in so many ways, reminds me of my son at that age.
I can only imagine the heart-wrenching pain that the parents must be going through. On one hand, it’s important to trust doctors and medical professionals that they know what they are doing and want what is best for their patient, especially in a case like this where there have been multiple reviews of his case.
But I also agree with criticism that the parents should be allowed to seek further treatment, if they can have the funds for it, or else they should be able to decide how their child will die, not the courts.
This case isn’t about socialized medicine. Great Britain’s universal healthcare isn’t “killing” this baby boy.
Instead, it is a case of a terrible terminal, genetic disease and a battle between the hospital and the parents on what is best for Charlie Gard. While I believe the parents should listen to the medical professionals, in the end, it should be up to the parents to decide what is right for their son.
— Lydia Seabol Avant writes The Mom Stop for The Tuscaloosa News. Reach her at email@example.com.