M aker

1 IN 6 BILLION: Beatrice and father Hugh in his home office, where he searched her DNA for clues to her unique condition.

My Daughter’s DNA

One father’s search for the scientific answers that no one seemed to have. By Hugh Young Rienhoff Jr.

If you scrape the inside of your cheek with a pop- altered. Clues like this always begin with the patient. sicle stick and mix it with a few homely salts and a shot of grain alcohol, you’ll see a fluffy cloud The Birth of Beatrice of material floating in the glass. It looks like cotton, My wife and I purposely avoided learning the sex of but it’s really the code of you. DNA is deceptively our third pregnancy, in part to add to the drama of ordinary-looking. delivery: we wanted to be surprised. I stood by Lisa

The human genome — the totality of each person’s as she lay on the table; though I am a physician, genes within their body — is a vast chemical space I could never become accustomed to the sight of the with 6. 6 billion bits of DNA information that con- birth of my own children. As my daughter emerged, stitutes genetically what we are as Homo sapiens. I caught a glimpse of her before she was wrapped in In that vastness, it’s easy for a single deviant bit of the towel and thought: what long feet you have! DNA to hide. I suspected that, like many of those Physicians can be like ornithologists glimpsing with genetic conditions, my daughter also had a rara avis, and those feet reminded me of Marfan single DNA base that was awry. Finding that variant syndrome — a genetic condition that also imparts is like looking for a single person in a world of 6 billion a tall and lanky frame. I had never seen an infant people. It’s a near-impossible task unless you have with that condition, and this was neither the time clues for where to look, for which genes might be nor place for me to be a doctor. I began to cry as

Photograph by Cody Pickens

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