When he was a week old, we got a call that his metabolic screening panel came back positive for congenital hypothyroid. I think this call, this first pronouncement, was from our midwife, but I don’t remember her calming tones, her everything-will-work out demeanor: I remember the blood in my ears, the grip around my perfect child tightening, the irregular shape of the bricks outlining our empty fireplace.
One of the births I attended in the past year was at that of a baby born with a previously undetected congenital defect. In the ensuring 12 hours or so, I had the profoundly humbling experience of watching a family’s understanding of their lives, plans, and realities change forever. Irrevocably.
It was something I had assumed I would encounter eventually, but isn’t that true with all complications of labor and birth? Some day I might see that. Not now. Not so soon, so early in my training. But there I was helping a family navigate suddenly the difficult world of grief, readjustment, hospitals, specialists, tests, etc. and ad nauseam after their beautiful homebirth. Trying to serve the needs of both parents who dealt with this information very differently, and trying to make this experience as holistic, loving, informed, and as close to the midwifery care they received before birth as possible.
Which is why I was deeply touched that Arwyn chose to share her story of discovering that her son had congenital hypothyroidsim on her blog Raising My Boychick. She talks about how it transformed her son’s babyhood and how her feelings about it have changed now that he’s older and now that she’s pregnant again. It’s a moving account, an apt commentary on ableism and disability activism, and in general an important read for birth workers.