“Holy shit,” she said, the echo of those miles sounding in every one of her words. “I’m pregnant.”
Twenty-Two
“You’re what?” I asked. It was my only available response.
“I’m . . . The double line on the pregnancy test . . .” she stammered.
“You can’t!”
“I know!”
Hilary had been in a serious relationship with a man she was hoping to marry. Ever since she’d entered her thirties, babies were on her mind. Although they used birth control, unluckily this time it had failed them.
Hilary’s regret was nearly palpable, especially as the boyfriend made it clear he did not want her to have this baby.
She reached out to the Seidman lab. Dr. Kricket told her she could have the embryo tested for the gene. It wasn’t ideal, but by twelve to fifteen weeks, doctors would be able to tell whether or not she had passed on the gene. They could also find out the gender of the baby. If the baby was female, from what we understood, there was great potential for a long and healthy life. Aunt Norma had been in her mid-seventies when she had grown catastrophically ill. No one mentioned my great-grandmother who had fallen ill at thirty-five and died at the age of fifty-five, and her long-term stays at various hospitals, unable to breathe. Sometimes, it’s easier to focus on the positive.
Over the course of several tear-filled days, Hilary wavered.
I remember at one point saying emphatically, “Hilary, imagine standing over the bed of your dying son.”
If our grandmother had known the sentence she was imposing on her children, would she have had them? What if she could have made that early connection between her mother and brother? What if she could have seen in her own swollen ankles a future in which she’d be hovering over the swollen bodies of her two boys? Although stoic, my grandmother stopped crying after Uncle Norman’s death, as she barricaded herself behind indestructible emotional ramparts. She knew better than to blame herself outright for their deaths, but that her gene had killed them was always on her mind.
Having seen the brutal death of my father, I felt it was my duty to do everything I could to keep this gene from becoming a scourge, overtaking who knew how many generations. At one time, diseases like cystic fibrosis had only impacted fourteen people, like ours did. That number had grown to the hundreds of thousands over the course of thousands of generations, with even more mutant variants expanding from that first strain. You can’t stop a gene from spreading when its impact is that large. But we could! Hilary and I and two of our cousins who might still have children had a chance to decide to not pass our gene, even if the details of such a plan remained vague. Dr. Kricket had told us to let her know when we were ready to bear children and everything would fall into place. Of course it wouldn’t be easy, but the terrifying alternative suggested untold generations of lymphatic swelling and starvation.
Hilary, pressured by her boyfriend and terrified she’d one day have to tell her child that she’d made a choice to carry to term a potential ticking time bomb, terminated her pregnancy in its earliest days. Soon after, her boyfriend left her.
* * *
Hilary does not go to movies after they’ve started. She claims it’s because, when she was a kid in a darkened theater, she once accidentally sat on a large, bearded man’s lap. I don’t know that she needs such a precise anecdote to support her decision. The truth is, Hil has never liked to stand out in a crowd. I always thought how unfortunate it was for her that, given this trait, she should be a pretty six-foot-tall blonde.
Despite her attempts at invisibility, though, Hilary has always been hard to ignore. She was the star player on her tennis team, our high school’s yearbook editor, and a news anchor on her university’s local TV channel by her senior year. When we were kids, she organized and supervised all of our games, like a good big sister. Maybe it’s because she’s the elder child, but even now Hilary is always somehow quietly, and as far as I’m concerned, thankfully, in charge.
Having children was always in Hilary’s plan. When her boyfriend broke up with her, she was devastated. Over the next three years, she dated like it was her job. When she met Brian, a landscape architect/urban planner who lived in Cincinnati, an hour and a half south of Columbus, she embraced the commute. Ten months later, they were engaged.
After Meredith Moore finished mapping our gene, Dr. Kricket had formulated a plan for safe reproduction. By 2007, our father had been dead for ten years. Hilary and Brian decided to consult Dr. Kricket. At the time, scientists could already read DNA well enough to locate and select for or against certain mapped wayward genes.
Hilary was told she could undergo in vitro fertilization, or IVF. IVF is the process by which a human egg is manually injected with a human sperm in order to create a viable embryo. The term “in vitro” itself means “a process performed outside a living organism.” In 1978, Louise Joy Brown became the first “test-tube baby” to be born, having developed as a fertilized egg for several days before doctors surgically implanted her in her mother’s uterus, about five days after fertilization. The five-day mark is typically when a viable egg reaches something called “the blastocyst stage,” meaning it has an inner-cell mass able to develop into an embryo.
What’s remarkable is that once a fertilized egg has reached the blastocyst stage, its DNA is already intelligible. It is readable. Scientists need only one cell from this tiny collection of five-day-old cells in order to have an incredibly detailed genetic recipe for the DNA of the unborn person these cells might eventually make up.
It doesn’t get much more sci-fi than that. Before a person is even a person, genetics already makes it possible to anticipate more facts about that person than even his or her own parents might know by a first birthday! Certainly when we’re considering the health and wellness of an unborn baby, this fact has the potential for stunning impact.
When Hilary and Brian married on Cinco de Mayo, Brian already understood the role IVF would inevitably play in the lives of his future children. Luckily, he was a full-blown science geek, tech-savvy and wholly unafraid of what Hilary had suggested to him: that whether or not she became sick with the gene, their children could be spared. Although having children was a priority for him, he felt that Hilary had formulated a sound and viable strategy for safely having those children.
One month later, Hilary and Brian met with a fertility specialist and explained her circumstances. The specialist recommended a lab in Detroit run by Dr. Mark Hughes where her fertilized eggs would undergo testing, five days after fertilization. The embryos at the blastocyst phase that were not compromised by the gene that had killed our father would be the ones that might potentially become her children.
Dr. Hughes is one of the most well-known and well-respected genetic embryologists in the world. He has been fighting for the rights of parents to give birth to children who are genetically healthy for a long time. The fact that he should have to fight for these rights truly seems to baffle him, as he’s made clear every time I’ve seen him interviewed on television.
In 1997, a scandal forced Dr. Hughes to leave the National Institutes of Health, the same government agency where my great-uncle Nathan had been a patient for ten months in the early 1960s. The strong regulations that control most gene-based research, some might argue, provide ethical protection. When Dr. Hughes accidentally selected and implanted an embryo with cystic fibrosis in the wife of a couple who had sought his services in the hope of accomplishing the opposite, word got out that he had been using government funds to perform procedures of this kind for years. Cystic fibrosis, as I’ve mentioned, is an incurable and devastating disease. Although the error was tragic, the overall goal of the program was noble. Dr. Hughes was one of the few doctors capable of reading the DNA of a fertilized egg. His leaving the NIH was an unfortunate event, but his move into the private sector was a boon for couples like Brian and Hilary who were desperate to give birth to healthy babies.
The procedure Dr. Hughes had master
ed was called “preimplantation genetic diagnosis,” or PGD. Today PGD has become exceedingly commonplace for couples seeking IVF treatments. Still, a loud cry for caution continues to taint its perception by the public.
In his book Far from the Tree, New York Times reporter Andrew Solomon wonders about a world in which technology develops the capacity to weed out “disabilities” like deafness and Down syndrome. Many have argued that both deafness and Down’s are more than just a “lack” of some perceived ability, and many people who were born with them have enriched our world. Similarly, Solomon wonders if we start with naming something an illness, how might we end up “defining” illness in general? Once we find the genetic link for a perceived “weakness” or for “stupidity,” will we weed those babies out too? And where does it stop? Will we weed out eye colors? Homosexuality? Ethnicities? Will we end up with a homogenized world that no one living today would recognize?
Of course, Dr. Hughes would probably argue that saving a child from a foreshortened life and compromised functioning is hardly the same as practicing eugenics. If modern science can prevent people like Hilary and me from bearing children who suffer from a devastating illness, why would we choose not to avail ourselves of this possibility just because we’re worried that it could mean that one day science would eliminate redheads? It sounds ridiculous.
Sometimes people who are uncomfortable with the idea of PGD ask me, “What if your father had never been born?” I understand their argument. What if in choosing to carry an embryo without illness, you are choosing against an embryo that would have been a great guy? I would argue that the person you end up creating might assert the opposite. But the fact that we live at a time where we have these choices, to my mind, is both humbling and empowering.
“We all throw genetic dice when we have children,” I heard Dr. Hughes say on 60 Minutes, “but when you know that those dice are loaded, that there’s a really reasonable chance that your baby will have an incurable, dreadful condition, you’re looking for an alternative.”
That’s exactly how Hilary and Brian saw things. They were thrilled to be able to send their fertilized eggs to Dr. Hughes after Dr. Kricket passed along the pertinent information to him, providing him with the map to our faulty gene. Then Dr. Hughes was able to choose two healthy blastocyst eggs. Those eggs were implanted in Hilary’s uterus the next day.
Nine months later, Addison Rose and William David were born healthy, beautiful, and free of the family gene. Both Hilary and Brian are proud of the way they handled the complicated fertility treatments that brought them their children.
Their son Billy was named after my father. Every time I think about it, I am overwhelmed by the miracle that allowed this sweet boy to have his grandfather’s name . . . but not the gene that killed him.
Twenty-Three
I hadn’t thought much about having children myself. Before I moved to Prague, I took a class to become a certified English teacher. One day, as the class chatted before our lesson, I mentioned casually that I didn’t want to have children. This group of people I had known for about ten days audibly groaned. One of them said, “You’re twenty-three, you’ll change your mind.” Another added, “You are totally the kind of person who says that, then ends up having kids.”
I didn’t fight back too hard. I understood that saying you didn’t want children was easy to do when your fertile years stretched out before you like a giant field of wildflowers. It’s when that field begins to resemble a Mad Max set that you become pretty sure your life’s purpose is motherhood.
As I got older, however, my feelings stayed largely the same. I liked children. I could sense that I would like having them. But having them was never my priority. In fact, if I could have just gotten knocked up without catastrophic genetic repercussions, I am positive I would have had children, or anticipated having them soon.
My move to New York, however, had reawakened something in me that resembled hope. What therapy had failed to do, relocating near several good friends in a town that practically hands out business cards to dream jobs accomplished completely. I remember skipping up subway steps one day and emerging into a warm spring afternoon. I felt happy, even euphoric. I began writing. I stopped smoking. I wore short skirts with high boots that covered the swollen ankles I no longer bothered to think about.
I was living with one of my oldest and dearest friends, Lisa, a successful landscape architect. One night, we went out to a neighborhood bar to celebrate another friend’s birthday. Outside, a tall blond man with broad shoulders was smoking a cigarette. I felt a pang of disappointment because, as a new nonsmoker, I understood the risks of attempting to date a smoker so soon. But once I was inside the bar, I couldn’t resist following him when I saw him get up and join the bathroom line. He introduced himself as Aaron, and quickly relayed the fact that he was from Ohio—the Cleveland area.
Aaron’s velvety voice was designed for radio, but he had never settled on a specific career. Instead, he aggressively committed to and then dropped whatever career path most interested him in the moment. Aaron had worked on iron-ore ships on the Great Lakes, he had gone to broadcasting school, and he had been the newsman at a country radio station in his hometown of Oberlin. He studied at the Cambridge Culinary Institute and had cooked in kitchens. Most recently, he had started a career in construction, doing craftsman work on some of New York’s most historic residences, including the Dakota.
The night I met Aaron, Lisa met his friend Elijah. Lisa blew off Elijah’s advances and Aaron asked me to go biking the next day. I said yes. The next morning I canceled, largely because I didn’t have a bike, but also because I wasn’t sure I wanted to go out with him.
The following week I changed my mind and texted Aaron to meet me after work for a drink. Our first date lasted from happy hour to almost one a.m., when he walked me to my subway train and gave me a hug good-bye.
By our third date, we had begun to uncover each other’s quirks. For example, Aaron told me that he figured the moon landing was probably a hoax and he sometimes voted Republican. It was also the first time he saw my swollen ankles. The fact of my gene came up on that date, but Aaron didn’t ask many questions. When I asked him what he thought when he first saw my ankles, he jokingly but truthfully deadpanned, “Well, it isn’t a trait you look for, but it wasn’t a deal breaker.”
I was lucky enough that a man like Aaron came into my life when he did, given that I might have settled for pretty much anyone with health insurance who could disregard my complicated health history. Several months later, in January 2008, he moved in with me. Around the same time, Lisa moved in with Elijah five blocks away.
Twenty-Four
Valerie was my dad’s first cousin, my grandmother’s oldest niece, and my aunt Norma’s oldest daughter. I wasn’t very close with her, at least in part because she was of my father’s generation and she lived in New Jersey. I was closer with her son Jordan, my second cousin, who was around my age and lived nearby in Brooklyn.
On April 20, 2009, I heard through the family grapevine that as fifty-nine-year-old Valerie was driving home from the supermarket in her suburban New Jersey neighborhood, something had gone terribly wrong. She was on the phone with a friend when suddenly her vision began to dim, then grew fuzzy. She pulled over and told her friend she’d call her back. With great difficulty, she typed out the numbers on her cell phone to reach her husband, Michael.
“Something’s wrong,” she told him.
“What do you mean?” he asked.
“I think I’m having a stroke.”
Valerie was starting to feel disoriented. She told Michael that she was dizzy, that it had been difficult to even dial his number. Initially, he wasn’t sure if she wasn’t just being dramatic. But Val insisted she couldn’t drive the car, so Michael, who was in his own car twenty minutes away, drove to where she had called him from. He was with their younger son, Storm, who had recently joined him in his pest-control company. Michael wasn’t particularly worried,
so he and Storm continued to discuss matters pertaining to their business as they had been doing before Val’s call.
They followed Valerie’s path from the supermarket toward their house until they saw her car lazily parked on the side of the road, hazard lights blinking. Michael knew the minute he saw his wife that something was very wrong. The entire left side of her face was drooping. As he walked her over to the passenger-side door of his car, he thought he noticed that one of her legs was floppy.
Michael drove to nearby Hackensack University Medical Center. Hackensack has one of the few bloodless units in the area. This is particularly important to the Jehovah’s Witness community, which Valerie and Michael had joined before they got married. Devout Jehovah’s Witnesses don’t believe in receiving blood transfusions for any reason. As Michael pulled Valerie from the car, her legs suddenly buckled underneath her. He called out for help. Valerie was swiftly taken from her husband’s grasp and rushed to the emergency room.
They were pushed through triage, and doctors quickly diagnosed Val as suffering from an “intracerebral hemorrhage due to vascular malformation.”
Val was right. It was a stroke.
Fortunately for her, she didn’t need a blood transfusion. Even more fortunate was the fact that Hackensack happened to have one of the leading trauma centers for stroke patients in the world. Michael sat with Storm in the waiting room for about half an hour. When a doctor eventually joined them, Michael asked him for an honest assessment. He didn’t want anything sugarcoated.
“People in this condition have a fifty-fifty chance of survival,” the doctor told him. “If she does survive, we don’t know how much damage has been done.” Suddenly Michael wished he had asked for a little sugarcoating.
Three weeks after he’d met his wife at her car and brought her to the hospital, the only positive response Val was giving the doctors was slightly curled toes when they swiped the bottoms of her feet. It was a good sign, Michael was assured. But everything remained touch and go. Michael felt like he was constantly shuttling back and forth between hopefulness and making funeral arrangements for his wife.
The Family Gene Page 14