The LHCGR gene (luteinizing hormone/choriogonadotropin receptor) triggers ovulation in women and testosterone production in men. And like all the men in his family, Patrick Burleigh carried the same gene mutation, leading to an extremely rare disease, testotoxicosis, which brings on puberty prematurely. The result? Burleigh got his first pubic hair when he was 2 years old. He went on to have a difficult time growing up until he reached the age of 14, he writes, when “puberty was finally done with me.”
Testotoxicosis affects fewer than one in a million men, and a leading expert estimates that we may only number in the hundreds. Being an anomaly for having pubes when you’re still breastfeeding isn’t typically something one brags about, which is why, like my forefathers, I spent the majority of my life hiding it, lying about it, repressing it, and avoiding it. This feeling of freakishness, of being strange and different, persisted well into adulthood, such that I refused to talk about it with anyone other than close friends and family.
That is, until a little over four years ago, when my wife and I were trying to have a baby of our own, an endeavor that took two years and countless episodes of joyless appointment sex before we finally decided to do in vitro fertilization. I came in a cup, my wife pumped her body full of hormones, scientists fertilized the eggs, and we ended up with five viable embryos. Everything looked great. And then I was faced with the hardest decision of my life.
We learned that we could biopsy the embryos to find out if any of them carried the mutant LHCGR gene: the mutant responsible for a childhood rife with shame, embarrassment, and bullying; the mutant responsible for my violent, antisocial behavior as a boy; the mutant responsible for the troubled adolescence that my father, grandfather, great-grandfather, and I all endured, an adolescence that nearly delivered each of us to jail or worse. If one of our embryos tested positive for a mutation of the LHCGR gene, we could eliminate it. My body would be the final destination of the disease that had defined my family for generations.
There was no reason not to do this. But I hesitated. Yes, my childhood had been unusually challenging, but I was now 34 years old and, by most metrics, I had a great life. How much of that life would have been different if I’d cast off the very thing that had made me me? Then again, could I watch as my son suffered, knowing I could have saved him from that suffering? I didn’t know. So I went back. Back to my childhood. Back to my infancy. Back to that first little baby pube.