Aggregated News

tweezers removing a piece of DNA

I’m a doctor. I strive to fix things that are broken. Hearts, mostly. But my daughter Ruthie has forever changed my thinking about what needs to be fixed.

Ruthie Weiss, our second daughter, arrived in this world with a shock of white hair. She reminded her mother, Palmer, and me of ourselves as blond children. A few days after we brought her home from the hospital, we nicknamed her Billy Idol.

Palmer began to notice that Ruthie’s eye didn’t track when she picked her up. I pooh-poohed that — spouting something about normal development being on a spectrum — until one day while changing Ruthie’s diaper I saw her eyes moving back and forth rhythmically, like the eyes in those red cat kitchen clocks that were once all the rage. My mind immediately jumped to something I had read in medical school.

UpToDate responded to my search for “infant nystagmus” with a list of mostly horrible neurological conditions. One — oculocutaneous albinism — stood out, making our jokes about Billy Idol seem less funny.

It took Susan Day, a highly... see more