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
40 Make: Volume 15