The summer I learned something tough.
A baby named Charlie Gard died today of a rare, fatal genetic disorder. The Daily Signal, an online publication of the Heritage Foundation featured a cartoon claiming that this unfortunate child was the face of all that is wrong with government funded health care. I expected nothing less.
Instead of writing something scathing and vile, let me tell you the story of one of the most educational moments of my life, as a 16 year old. It was part of the “candy striper” volunteer training at the St. Louis Children’s Hospital. As part of our training this bunch of giggly kids (boys and girls) were ushered into a lecture hall where one of the medical school faculty introduced himself. He then proceeded to introduce two young children to our group.
The first child was a bouncy girl of six or so. She looked just like what you would imagine a healthy young first grader would look like: standing on both legs, saying her first name, waving at us before an adult took her hand and lead her off the stage.
The second child was a bit younger, maybe two or three. She was wheeled in on large stroller which was a bit unusual for 1972. She had sandy blonde hair that was quite curly (possibly a mixed race child). Her face was odd: quite flat and very square with oddly protruding eyes, which were otherwise quite bright and engaging. She had mitts on her hands, which was odd for a St.Louis summer. But she smiled at the doctor giving the lecture and engaged a bit with the person pushing her large stroller. After a few minutes, this little girl was wheeled off stage.
The doctor asked us a question that I will always remember: which of these children did we think was suffering from a terminal illness?
The answer was the seemingly perfect first little girl. That child had a medical condition that would take her life within a matter of months. It was something that the best medicine and the most creative medical professionals at a premier teaching hospital, Washington University Medical School, were not able to fix, at least not during the summer of 1972.
The other little girl, the doctor explained, had been so deformed when she was born that her mother refused to touch her own baby. The little girl been left at the hospital, abandoned because she was too horrible to look at, in the opinion of her own mother. But this child was not fatally ill. Yes she had been born with webbed fingers and toes. And yes, her facial bones had not set properly. And sure, she had some orthopedic issues that would mean that she would need some surgeries and physical therapy but soon enough she would walk and run. All the things that really count — strong healthy heart and lungs, a functional brain, eyes that could see, ears that could hear, a digestive system that took nutrients from food. This kid had all of those things and more. And with plastic surgery, she would be as normal (and good) looking as she was healthy and sturdy.
I am in tears as I write this remembering that summer day when I learned for certain that looks are not always what they seem. I deeply and greatly appreciate the wisdom and compassion of that medical school professor and the families that allowed me and the other young volunteers to see those two little girls and be told their stories.
I am quite sorry for the parents of baby Charlie.
I will not let this one very sad story be used as propaganda against the amazing history of public health improvement, including a substantial decline in infant and maternal deaths, that are the result of the existence of Great Britain’s National Health Services and the commitment of its staff of professional health care workers. You want the truth about how effective this program of government provided health care is? Checkout this link. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/childhoodinfantandperinatalmortalityinenglandandwales/2015
P.S. While looking for images to include with this essay I found the Alabama Prison Birth Project. I think they could use some some love. https://www.prisonbirth.org/services
