My Brittle Bones by Phil Burcham

Well, I think First Things is my new favourite journal. In the latest issue, Prof. Philip C. Burcham, Professor of Pharmacology in Perth, Western Australia, has a piece on My Brittle Bones. Burcham documents his life growing up with a brittle bone disease and what happened when his daughter was diagnosed with the same condition. This is what he wrote:

After marrying my wife in the United States on completion of my postdoctoral studies, we returned to Australia, where our daughter was born a few years later. One day, our petite ten-month-old infant was trying to pull herself up using a chair leg for support. My wife heard a popping sound and a whimper as she flopped back onto the floor. X-rays indicated she had snapped a tibia.

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.

“If that is the case,” the doctor replied, turning toward me, “we will need to obtain blood samples from some members of your extended family to allow DNA testing.” Fearing my family might be reluctant to participate in a research project, I naively asked why the genetic data was required. Waving a dismissive hand toward our daughter, who until this point had tried her darndest to win the doctor’s attention with coy smiles and giggles, this gifted physician who knew so much about the disease abruptly replied, “We want to ensure you don’t have another one of those!”

My emotions now resembled those of Hansel and Gretel at the point of their rude awakening in the famous fairy tale. Like the sugary treats fastened to the witch’s cottage, the saccharine assurances from the ER staff that this doctor was keen to help OI patients had obscured his intentions: They had brought us to a eugenicist who wished to push any of my future OI-affected offspring into the oven.

My wife had awoken to the same reality, and in one of the most galvanizing moments of our marriage, with firm voice she informed the doctor that she would never consider aborting a child within her womb. We were promptly shooed from the room.

His conclusion to the article is equally moving:

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.