Phil Burcham is remembered by South Australian Presbyterians from his time here (he and his family are now based in Perth, WA), and is known by some around the nation.
In this extended article, published on the First Things website, he writes of his personal experience with the modern eugenics movement, now known as genetic counseling, and relates how, because of a mild genetic condition which results in bones which break more easily than normal, that medical wisdom believes it would be better if he, his extended family, and even his daughter were never born.
Read My Brittle Bones at First Things.
HT: Michael Bird.
Upon learning of the disorder affecting my family, the emergency-room staff in the local children’s hospital told us about a gifted doctor who knew a lot about OI. I was keen to meet the doctor, given my positive memories of the orthopedic surgeons who cared for me in childhood. A pharmacologist by training, I also knew that the bisphosphonates—a class of drugs developed for osteoporosis sufferers—were then being tested on OI patients. I hoped the doctor would know if they might help our daughter.
We found the doctor had little interest in the clinical management of pediatric OI patients and knew little of bisphosphonate pharmacology. The doctor and attending nurse initially engaged us in chatty small talk, but their intentions soon became clear: They wanted to know whether we hoped to have another baby. After my wife said we did, exasperated grimaces passed between them.
As one born congenitally frail, I have come to respect this mysterious disorder called osteogenesis imperfecta and even thank heaven for how it prematurely confronted me with my own frailty during my youth. By forcing me to face my limitations and find the fortitude to transcend repeated bouts of medical adversity, in requiring me to choose a vocation in which success did not depend on brute strength, OI made me a stronger and more mature individual.
In the end, we are all frail creatures. Maybe this is why some people wish to abort persons like my father and me: Perhaps we confront them with the inconvenient truth of their own mortality and the ultimate futility of their existential rebelliousness. Rather than pursuing the futile idea that humanity can live in perpetual defiance of God, we Brittle Burchams have found great hope and refuge in the arms of the strong God who became as weak as a newborn baby to conquer the evil that stains our fallen world.