This story was produced in partnership with Epic Magazine.
I got my first pubic hair when I was 2 years old.
I couldn’t talk, I could barely walk, but I started growing a bush. Or so they tell me. I have no recollection of a time before puberty, before the carnal cravings, the impulses, the angst and anger and violence. There was no prelapsarian age of innocence for me; I was born, I took a huge bite of the apple, and, by 2 years old, I was pretty much ready to get busy with Eve.
It was the same for my father, and for his father, and for his father, and for the men in my family going back as far as we have records. We’ve all carried the same hereditary genetic mutation. On chromosome 2 in the DNA of all human beings, there’s a gene called the luteinizing hormone/choriogonadotropin receptor (LHCGR). In women of reproductive age, the LHCGR triggers ovulation; in men, it triggers testosterone production. But somewhere back in the lost recesses of my family’s genetic history, an unfortunate ancestor of mine was born with a mutant LHCGR gene.
Having a mutant LHCGR gene leads to what doctors now call familial male-limited precocious puberty, an extremely rare disease that affects only men because you have to have testicles, which is why it’s also called testotoxicosis. The condition tricks the testicles into thinking the body is ready to go through puberty — so wham, the floodgates open and the body is saturated with testosterone. The result is premature everything: bone growth, muscle development, body hair, the full menu of dramatic physical changes that accompany puberty. Only instead of being 13, you’re 2.
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.
There it was, in all its glory — black, coarse, curly as a bedspring, coiling up from the velvety pad of my infant mons pubis. My parents had been anticipating it, my father especially, having had precocious puberty himself. Still, they had no idea what to do. My dad hadn’t undergone an effective treatment for his condition; almost nobody on the planet had. In fact, I soon became part of one of the largest therapeutic studies for testotoxicosis. And really that was only by an act of kismet: My mom’s best friend had read a newspaper article about a new study at the National Institutes of Health in Maryland on familial male-limited precocious puberty. A phone call was made and three weeks later my mom and I were on a train to Maryland from our home in New York City.
Consenting to participate in the NIH study meant that all of their treatments for curtailing the mutation’s effects would be free until I completed puberty, but it also meant I had to allow doctors to endlessly poke and prod and probe me. With a condition named testotoxicosis, it’s no surprise that much of this poking and prodding happened to my testicles. They were measured using what resembled a ring of keys, only instead of keys there were wooden testicles of different sizes. My mom and a nurse held me down on the hospital bed while the doctors squeezed my scrotum to determine my specific girth.
The testicle sessions were only one of a battery of tests to which I was subjected. There was the dreaded heparin lock, an intravenous tube embedded in a vein of my arm that provided the nurses and doctors with quick access to my blood. As my mom liked to say, I literally paid for my treatment in blood, filling test tube after test tube from the rubbery spout. And then there were the photographs. The strange man who photographed medical anomalies kept his studio in the basement of the hospital. It was cold, cavernous, creepy. There I stood, buck naked, baring my genitalia to a guy who had just taken pictures of elephantiasis or conjoined twins or whatever other physical deformity. This was especially hard for my mom, who, after the first or second “shoot,” politely told him to fuck off.
I have the records of my first visit to NIH. I was 3, but my height and weight were those of a 7-year-old. My testosterone level was between 300 and 500 nanograms per deciliter, within the normal range for a 13-year-old boy. (The testosterone level of a typical 3-year-old is around 15 nanograms per deciliter.) I had a slight mustache and would soon have minor acne. The doctors also noted I was prone to aggressive outbursts; that same year, after an argument with my mother, I punched my hand through a glass door and severed the ulnar artery in my wrist, nearly losing the use of my right hand.
To paint a picture of my unusual appearance at that age, I’ll defer to the vivid language of Dr. Robert King Stone, Abraham Lincoln’s personal physician and one of the doctors at his side the night he was shot. A decade before the Lincoln assassination, in the 1854 edition of a long-defunct publication called The Eclectic Medical Journal, Stone wrote one of the first medical accounts of a boy with familial male-limited precocious puberty. He describes his shock upon discovering the boy is only 4 years old:
I at once declared my incredulity, for his height and robust development seemed those of a child at least six years older than the age he mentioned … If the child’s face is concealed, the examiner would declare his figure to be that of a miniature man, perfectly developed, and at least twenty-one years of age … I may observe that the father presented extreme precocity, having experienced his first sexual indulgence at the age of eight years … delicacy forbids my detailing his prowess at that early age.
Stone felt little need to conceal his titillation at discovering this sexually mature 4-year-old. His attitude reflects the same sexualization I often encountered as a young boy. “I’ll never forget the look on your pediatrician’s face the first time he saw pubic hair on a 2-year-old boy,” my mom recently told me. It was a look we frequently saw in doctor’s offices, locker rooms, public restrooms, and swimming pools. Revulsion. Disbelief. Lurid fascination.
I spent a week as an inpatient at NIH that first visit and would return every six months until I was 12. Pediatric Ward 9-West became a kind of second home to me: the playroom with its dirty pink carpet strewn with broken toys and secondhand books, the moms commiserating in the lounge, smoke from their cigarettes seeping into the hallway, The Dukes of Hazzard on the wood-paneled television above my bed. I liked it there. And because testotoxicosis is so rare, the doctors treated me like a medical celebrity; they couldn’t wait to observe and examine and measure me. I learned to enjoy the attention. It made me feel special. In fact, compared to pediatric patients — kids with cancer, kids with brain tumors, kids with major physical disabilities — I was pretty normal.
At the end of the second visit, they sent me home with a suitcase full of a drug called spironolactone, intended to block the effects of testosterone on my body. From that moment on, taking medication became a central part of my life. At times, I was swallowing a dozen pills a day; at other times, I got an injection in my leg every night. I may not have been a freak at the hospital, but the regimen of pills and shots ensured I remained one at home. Sleepovers were the worst — the awkward explanations to new friends, the gawking parents, the embarrassment at having my mom show up to jab a needle into my leg.
The goal of the drugs was to slow or even stop my pubertal development so I’d have a normal childhood and reach my “target height.” For all their accelerated growth as kids, men with precocious puberty typically don’t get much taller than five feet. Like a sprinter who comes out of his blocks too fast and burns out before he can finish the race, men with testotoxicosis shoot up quickly in their first few years, but their bones then fuse prematurely and they fail to reach their full heights.
More than likely, the drugs hardly worked. I’m six feet tall, which, by precocious-puberty standards, is gargantuan. Yet my dad reached five-foot-11 without treatment, which is even more remarkable. The first time he showed up at NIH, the doctors gathered around and marveled at him like he was Yao Ming. The working theory is that our family has tall genes that counteract the stunting effects of our mutation, but I may have been robbed of as many as five inches of height. My brother, who didn’t inherit the mutation, is six-six. The other goal of the drugs, to slow my puberty to a normal rate, was also something of a failure. The drug protocol was new and experimental; consequently, years passed before the right pharmaceutical cocktail was concocted — by which time the word normal had long since stopped pertaining to anything about my childhood.
One of my earliest memories is of being in the women’s locker room at the YMCA with my mom before a swim class. An older woman noticed my muscular, pubescent body and was horrified: How dare she bring a young man into the ladies’ locker room? Mom explained that I was only 4. The woman refused to believe it. She accused my mom of lying, of being a crazy, permissive, New Age parent. Mom stood her ground, but we were both in tears. This wasn’t an isolated incident; while these encounters were painful for me, they were perhaps even more painful for my mom, who had to watch her baby repeatedly be humiliated and shamed. “I always kept a box of Kleenex with me,” she said, “because I cried all the time.”
My mom was usually the parent tasked with explaining the jarring gap between my appearance and my behavior; she was the one staying with me at NIH, the one administering my shots every night, the one apologizing to teachers and counselors and coaches for my hormonal outbursts. She had been an actress with a promising career before I was born, and though she denies it, I suspect the all-consuming work of parenting me contributed to her decision to stop acting. She was a beautiful, outgoing young woman, the kind who puts people at ease. Those qualities made her a magnetic performer but also my greatest ally: People gave me a break because they liked my mom. As bad as things got, they would’ve been incomparably worse had she not been at my side.
Still, despite Mom’s best efforts, the shame — and the shaming — became a constant in my life. Much of it came from my preoccupation with sex. I began experiencing sexual impulses at such an early age I don’t remember a time before needing to find an outlet for them. “I’ll show you mine if you show me yours” became an obsession. What was an innocent game of discovery for other 4-year-olds became, by virtue of my sexually capable body, decidedly less innocent for me.
I had one friend in particular; I’ll call her Abigail (names have been changed throughout). She and I were inseparable. Our favorite variation of “I’ll show you mine if you show me yours” took place in the bathroom. The game was simple: I would try to pee through Abigail’s legs while she peed on the toilet. This was impossible because I inevitably had an enormous erection. I was 5. I didn’t understand my drive for sex. I simply felt it and felt compelled to act on it, but I wasn’t old enough to act in any identifiably sexual way. I didn’t even know what sex was. I just felt an urgent, inscrutable need to do something, anything, with my engorged genitalia. Well into adulthood, these memories plagued me. Had I been some kind of preschool-age predator? I didn’t know.
In my family, shame trickles down like a Champagne fountain overflowing into glass after glass until it spills everywhere and makes a big fucking mess. Shame is an outgrowth of repression, and repression is my family’s prevailing mechanism for coping with the hardships of precocious puberty. Dad was born in the 1950s, a decade that made a fine art out of repression, and from what I’ve gathered from my mother — and, in rare moments of openness, my father — to survive both at school and at home he quickly learned to bottle up the messiness of going through puberty when he was 3. My grandfather, Bob, who’d also had the mutation, didn’t want my dad to endure the social stigma of being freakishly large and hairy compared to his peers, so, early on, he decided my dad should skip two grades in school and simply lie about his age to everyone. His best friends didn’t learn he was younger until well after high school.
Though he later got himself into University of California–Berkeley, my father struggled academically and didn’t want me to do the same. My parents put me in classes with children my own age to give me a “normal” childhood, which, in retrospect, is laughably naïve. Their decision may have helped me keep up with my schoolwork, but it also set me up to be the class freak, which was not a role I accepted with grace. The hormonal roller coaster I was on led to irrepressible bouts of rage. I ricocheted from one emotional extreme to another. I was all of the things people are when they’re 14 or 15, but I was 6. So when I got teased or bullied or left out, I got mad. I was big and I was strong and I could punch harder than most 6-year-olds on the planet.
So that’s what I did. I punched. People wanted to provoke the big kid, and I was easily provoked. The problem was that when teachers or coaches or parents arrived on the scene, the optics were not in my favor — a beast of a boy pummeling a much smaller child, who was often in tears. Nobody was going to believe I’d been bullied and baited into fighting. It also didn’t help that by the time I was 7 years old, I was branded the Bad Kid. It was a brand I didn’t shake until the end of high school, a brand that burned so deeply that even now I often think of myself that way.
I remember the first time I heard it. It was open house in Mrs. Bright’s second-grade class. I was 7. We’d moved to L.A. from New York in the middle of the school year so my dad, who was an actor, could find work in television, forcing me to integrate with a group of kids who’d known each other since kindergarten. To decorate the classroom walls for open house, each of us had crafted a picture of himself or herself out of pipe cleaners, construction paper, and yarn. As I led my parents to my creation, of which I was inordinately proud, my second-grade classmate Joey stood there with his parents. He pointed to my picture and whispered, “That’s the Bad Kid.” I didn’t react, but it crushed me. Joey was a quiet, happy kid. We’d never had any beef. Plus, he didn’t know I was standing there; he hadn’t said it to taunt me. There was only one conclusion to draw: Joey had said this because it was true.
The problem with being the Bad Kid is that it’s cool. You get attention, people know who you are, you develop a kind of mystique. All the negative scrutiny ends up transmuting into reinforcement. So after years of my hormones and freakish physical appearance undermining all of my efforts to fit in, I finally gave up: They want the Bad Kid? Fine. I’ll give them the Bad Kid.
My younger brother Nicholas was born before we moved to L.A., my parents having waited more than five years to have him after the Sisyphean struggle of parenting me. Nick ended up being as obedient a child as I was wayward. This was fortunate because, by the end of elementary school, I had started smoking cigarettes, sneaking out at night, and writing graffiti.
My dad took a punitive approach to my behavior, and my mother followed his lead. Dad never got physical, but he was strict and traditional. Every time he caught me smoking, he grounded me for two weeks; he caught me often, and the groundings accumulated into months and months. His approach did little more than drive me to greater acts of rebellion and more sophisticated methods of deception. You’d think that because he’d also had the disease, his capacity to understand and forgive would be greater than anyone’s. The opposite held true.
Didn’t he know how lonely it was? Didn’t he know my brain was unfit to handle the hormones assailing my body? Didn’t he know the behavior for which he was constantly punishing me was out of my control? Of course he did. He’d been through it himself. But he had dealt with precocious puberty by lying about it, concealing it, and ignoring it, and that was how he wanted me to deal with it too — as if it didn’t exist, as if the cause of my misbehavior was simply my own immaturity, poor decision-making, and lack of self-discipline, all things I could control if I weren’t so weak. Testotoxicosis, this fucked-up mutation I had inherited from him, of all people, was never discussed. Perhaps because if it had been, he would’ve had to take responsibility for the fact that he was the one who gave it to me.
If he had popped the latch on that treasure chest of horrors, however, I would’ve learned that being the Bad Kid had a rich tradition among the men in my family. Like some kind of filial Sherlock Holmes, I later pieced together from hints and anecdotes that my father had started binge-drinking at 12 or 13 with his much older friends and cruising in his Thunderbird on the backstreets of Stockton, California. Stockton in the ’60s was a rough place to grow up, especially when your dad was a drunk who abandoned you, your mom, and your two younger sisters, moving into a house with another woman six blocks away. When you walked by while he was mowing the lawn or retrieving the mail, he pretended you didn’t exist.
The constant rage I felt at being misunderstood and unfairly targeted must have been incomparably greater for my dad, yet he pushed on, graduating high school at 15 and going to work in a factory to support his mom and sisters. He worked his way through junior college and eventually got the hell out of Stockton and vowed never to treat his own son the way his father had treated him. He succeeded at that. He may have been emotionally handicapped by his own traumatic childhood, but I never doubted his love for me.
Understandably, he never really forgave his old man, so I didn’t meet Grandpa Bob until I was almost an adult, and he died shortly thereafter. My dad doesn’t like to talk about him, but what I’ve strong-armed him into telling me is that he grew up the son of an auto-parts salesman, whose wife left him when Grandpa Bob was a toddler. Grandpa Bob didn’t have siblings, so before he was old enough to go to school, he would travel from city to city with my great-grandfather Bud on sales calls, staying in boardinghouses and motels. I can’t help but imagine them standing side-by-side on a doorstep, wearing matching gray suits, my 4-year-old grandpa with his own miniature briefcase full of hubcap catalogues and spark-plug samples.
Soon after Grandpa Bob was school age, his father dropped him off with some relatives on a farm in Nebraska and resumed his itinerant life alone. These relatives couldn’t get past my grandfather’s bizarre appearance and, from what I gather, his precocious sexual urges. From the outset, they thought him a freak and treated him like one.
By 10 or 11 years old, my grandfather had started running away from the farm, hopping trains to far-off places. He would ride for thousands of miles until he found a suitable place to start a new life — not as a child but as an adult. He picked cotton on a plantation in the South when he was 11. He hopped a train up to the Canadian border and joined the Border Patrol when he was 12. Each time Grandpa Bob disappeared, Great-grandpa Bud would have to track down his son and haul his ass back home.
My father tells me Grandpa Bob despised Bud, who was evidently as mean and abusive a son of a bitch as Grandpa Bob would later become. It’s ironic, then, that Grandpa Bob was following so closely in his father’s footsteps by running away from home and using his precocity to start a new life, because my great-grandfather was by far our family’s most infamous example of this.
In 1917, when he was 11, Great-grandpa Raymond “Bud” Burleigh ran away from home in Omaha, Nebraska, to join the Army and fight the Germans. He claimed he was 20 years old. Army recruiters believed him, but his mother discovered where he’d gone and rushed down with proof that he was only 11. Bud was undeterred. He eventually eluded his mother, claiming to recruiters that he was 20-year-old Fred De Reaux — a name he came up with after seeing a car called the De Reaux on the way to the recruitment office. He was nearly six feet tall and had a full beard and the musculature of a young man.
Though he was still years from legal driving age, the Army assigned Bud to chauffeur generals and colonels on the front lines at Château-Thierry, France. Ferrying top brass up and down the front soon grew boring, however, so he went AWOL to Paris, where he frequented the city’s brothels and embarked on a weeks-long bender until the Army caught up with him and threw him in prison. Upon his release, Bud was reassigned to a battalion in the Argonne Forest, where he hijacked an airplane equipped with machine guns and set out to single-handedly kill German soldiers loitering in no-man’s-land. Bud was later quoted in a newspaper as saying, “They told me when I got back that I looped the loop three times, but if I did, I didn’t know anything about it.” When the plane landed, he was arrested again. This time he was sent to fight in the trenches as punishment, where he served for six months before suffering mustard-gas poisoning and being hospitalized. Only then did the authorities discover his true age.
They sent him home, where he became a minor celebrity after the newspapers picked up his story, dubbing him “The Youngest Yank” because he was indeed the youngest American soldier to fight in WWI. One of these news stories describes him as “six feet of closely knit bone and sinew, a face full 21 years old, and an eye keen and steady.” He was barely 14.
I unwittingly — but enthusiastically — snatched the baton from my forebears and ran with it. Like them, by the time I was 10 or 11 I had grasped the advantages of lying about my age, the most satisfying of which was that nobody gave me weird looks when I told them how old I was, so I didn’t have to explain my strange mutation to anyone. The lie also enabled me to live a life my peers could only dream about — hooking up with older girls, buying cigarettes, driving cars, hanging out with older kids, even buying alcohol.
By 12, I was smoking pot regularly and had experimented with pretty much every sex act except the deed itself (which would happen at 13). I was still writing graffiti, scrawling the all-too-apt LOST across bathroom walls, bus windows, and street signs all over Santa Monica and Venice. I shoplifted, ditched school, fought, and articulated some version of “Go fuck yourself” to every authority figure in my life. Nevertheless, I managed to do well academically, partly because I went to underfunded public schools that weren’t demanding and partly because the doctors at NIH had added a medication called testolactone to my pharmaceutical cocktail when I was 8 and it was finally helping. Yes, I was rebellious, but the drugs briefly quelled the testosterone enough that I wasn’t going to start hopping trains or running off to join the Army. I wasn’t all that different from other adolescents growing up fast in a big city.
And then they took me off the drugs.
In the middle of seventh grade, I spent my annual two weeks at NIH getting tested, watching Home Alone in the hospital lounge, awkwardly socializing with the actual sick kids on my ward. Then, on my last day, the entire team of doctors came to my room. They said my bone age was now close enough to my actual age that they could take me off the meds. I was elated.
The problem was they didn’t slowly wean me off my medication. I went cold turkey. All of a sudden, my hormones were uncorked. I felt angrier and more unhinged than ever, more alienated from family and friends and teachers. I started skipping school almost every day, doing drugs, fighting. My mom recalls feeling panic every time she dropped me off at school, fearing the call from the principal that often came just hours later.
And then, one bright spring day in my seventh-grade year, a different call came. This time from the police. I had come to school high on LSD, brought an extra tab of it with me, and, along with some other 12-year-old buddies, decided it would be funny to slip the extra tab into the soda of an unwitting friend, Tania, who freaked out and got rushed to the hospital. The police arrested me and marched me out to their squad car in handcuffs just as school was letting out, so everyone could gawk at the Bad Kid who had achieved a truly unprecedented level of badness.
How does a 12-year-old boy get his hands on LSD? By pretending to be five years older so he can hook up with a 17-year-old girl crashing on the couch of a drug dealer who brings the 12-year-old boy three tabs of LSD on a school night, two of which he takes by himself after his parents go to bed, leading to the most harrowing night of the young boy’s life. Like my forefathers, I had used my precocity to do something for which I wasn’t ready. Like them, I had crossed a threshold beyond which it was impossible to return to anything resembling normal adolescence.
I got expelled from the entire school district. My friends’ parents forbade them from seeing me. My parents shipped me off to a military academy in rural Indiana. I lasted barely six months before they also expelled me. At times my behavior shocked me as much as it did other people. I wasn’t without remorse about what I had done to Tania or my parents or anyone who’d found themselves on the receiving end of my anger and impulsivity. On the contrary — I was tormented by guilt. I lacked control and I hated myself for it.
By the time I got readmitted to the school district, I was 14 but looked pretty much as I do now: six feet tall, full beard, lean, hairy. But something miraculous was happening; my peers were catching up to me. Other kids in my grade had started shaving, developing muscles, and thinking about sex as obsessively as I had been since age 4. Plus I was going to a public high school in Los Angeles with 3,000 students. Suddenly, I was just another skinny white kid who smoked too much pot. I stopped sticking out.
Most important, after more than a decade, puberty was finally done with me. The hormonal roller coaster leveled out. I calmed down. I could see beyond the immediate moment. Indeed, for the first time, I could see my future, and it scared the shit out of me. My past was stained with expulsions and arrests and violations. College seemed out of the question.
It was this vision of personal apocalypse that spurred me to action. I pulled away from my friends, many of whom were getting into hard drugs and would soon end up in rehab or prison. I stopped smoking cigarettes and started playing sports. I read. I took honors classes. I had a long-term relationship with a girl who was smart and kind and ambitious. I got into Dartmouth and earned a fellowship to attend graduate school in Ireland. Along the way, I met Meredith, the woman I would marry, who went on to become an obstetrician/gynecologist and then a female-infertility specialist. Proving the gods do have a sense of humor, infertility medicine is a subspecialty of endocrinology — the field that also studies familial male-limited precocious puberty.
Like my father, I felt I had to bury my abnormal childhood to have a normal adulthood. I became just another clean-cut white kid with an Ivy League degree. And I liked that. I liked being boring. When occasionally I got close enough to people to tell them about my childhood, they responded with disbelief. This well-spoken, levelheaded young man grew baby pubes and dropped acid into a 12-year-old’s cola?
But as I told more people, most of whom responded with compassion, I could feel the humiliation dissolving. I began to suspect that the embarrassment I felt was of my own devising, that perhaps I had inherited not only my forefathers’ genetic mutation but also their shame.
I eventually asked Abigail (she remains a friend) what she remembered about our bathroom encounters. I half-expected her to say something like “They traumatized me so deeply I haven’t been able to maintain a healthy relationship, and if #MeToo applied to preschoolers, you’d be ruined.” Instead, she said the opposite: “It was completely normal. We were all curious at that age. You weren’t even the only one doing it.” I was shocked. The deviance, the transgression, had all been in my head.
Still, four years ago, when faced with the prospect of having a son with precocious puberty, selecting against the genetic mutation seemed like the obvious choice. If it had caused me so much trauma, if I had spent most of my adult life hiding it, why not just do the test and discard the embryos that carried the mutation? Yet I couldn’t shake the feeling that eliminating the mutant gene would be eliminating the very thing that, for better or worse, had defined me.
Then, one afternoon as I was pulling into our driveway, my dad called.
Our relationship had improved considerably since the days of punching holes in walls and screaming at each other in public places. Still, we never talked about precocious puberty or about the difficult years when we were at war. They existed like redactions in a confidential document, thick black lines blotting out painful memories. He told me he’d learned from my mom that we were thinking of biopsying the embryos for the LHCGR mutation.
“Why would you do that?” he asked.
I was stunned. Had he not been present for my childhood? Or his own, for that matter? But before I could say something I’d regret, he interrupted me. “Look, I don’t know what kind of childhood you would’ve had without precocious puberty — maybe it would’ve been easier, maybe you would’ve been happier, who knows. What I do know is that it made you the person you are today. And that’s a person I love and admire very, very much. So do the test or don’t do the test, but just know that, if you have a son, and that son has precocious puberty, he’s going to be just fine. Hell, with you as a father, he’s going to be better than just fine. He’s going to thrive.”
I couldn’t speak. When the sob cleared my throat, Dad and I talked openly for the first time about having precocious puberty. We acknowledged that our childhood difficulties had probably made us stronger adults, that growing up as outsiders, while wrenching at the time, had probably helped us find our calling as artists and that the unpleasant feeling of “otherness,” anathema to fitting in as a child, could transform into a feeling of “specialness” if properly cultivated in adulthood. For the first time, I saw our genetic mutation not as a blight but as something that connects us uniquely to our ancestors. It hadn’t occurred to me until that afternoon that I didn’t have to pass that legacy down. For the first time, I saw that this weird inheritance didn’t have to drive a wedge between me and my future son. It might even bring us closer.
After an hour, my dad and I said we loved each other and we hung up. I walked into the house and told Meredith I didn’t want to eliminate the mutation. If our son inherited precocious puberty, I felt confident we could handle it. She hesitated. As a reproductive endocrinologist, she knew better than anyone how challenging it would be to raise a boy with the disease. We talked about it for a few days, researching treatments, discussing it with friends and colleagues, weighing the pros and cons on long walks with our dog. Ultimately, we ended up on the same page. We wouldn’t biopsy the embryo.
So, in July 2014, we implanted our best embryo and prepared for our worst outcome. I got in touch with one of my old doctors at NIH, Ellen Leschek, who is still practicing and who updated us on the latest treatment protocols. We consulted a pediatric endocrinologist in Los Angeles and positioned him to become our son’s doctor if he inherited the disease. We contacted the one laboratory in the country that could detect the mutation from a blood test and arranged to have a sample taken from the baby’s umbilical cord at birth. We decided not to learn the baby’s sex, because we didn’t want the added worry if we knew we were having a boy.
At about 2 a.m. on March 12, 2015, Meredith went into labor. She labored for 17 hours before the doctors had to do an emergency C-section. When I finally peeked over the surgery curtain, I beheld, amid a battlefield of blood and guts, a tiny human. A tiny human with a penis. “It’s a boy!” I cried, just like in the movies.
We named him Ned after her beloved grandfather. We brought him home and lay around the house and stared at him for two weeks while friends and family brought us food. And then we got the test results.
They were negative. Ned hadn’t inherited the mutation. My friends and family reacted appropriately — with relief, with congratulations, with happiness. I barely reacted at all. I had stopped worrying.
In August 2017, our daughter Claire was born. We didn’t test her umbilical-cord blood because, without testicles, the condition wouldn’t manifest in her body.
But women can still carry the mutation, and they can pass it onto their children. We don’t know if the LHCGR gene on chromosome 2 of Claire’s DNA is a mutant, and we probably won’t ever know unless she has a son of her own who, like his grandfather, and his great-grandfather, and his great-great-grandfather, and his great-great-great-grandfather, sprouts a coarse, curly little hair on his mons pubis when he’s still in diapers. And if he does, I know he’ll be all right.
*This article appears in the January 7, 2019, issue of New York Magazine. Subscribe Now!