I also recognized that this medical breakthrough—whenever it happened—would result in an extraordinary amount of media coverage, and would spark ethics and policy debates. I knew that it would be easier for people to oppose abstractions, like designer babies and embryonic stem-cell research, than it would be to challenge medical advances that could save a child like Henry. So in return for my gift of being able to be among the first, I carefully chronicled each injection. I kept track of every egg I produced, every embryo that was successfully fertilized, and every disappointing test result. In my journal, I described the heights of my hope and the depths of my despair.
On the day of my appointment, I left my aunt and uncle’s house in Morristown at five forty-five a.m., and drove their car into New York City for further testing. I gave a few vials of blood, had a sonogram, and was back in the car heading to New Jersey three hours later. I spent the day napping, working, and wishing I were with Allen, Henry, and Jack. That evening, I learned that despite forty-two shots of Lupron, my estrogen was still too high to safely begin IVF. On the phone, Dr. Rosenwaks presented three possible courses of action. I could immediately begin taking Follistim, a medicine that stimulates the production of multiple eggs, and come in for careful daily monitoring since I would be considered high-risk because of the possibility of hyperstimulating my ovaries. Or I could increase the number of daily Lupron shots to two a day for a few days and then start Follistim. Or I could take a shot of hCG like the last time, go back home, and wait a few weeks to begin the process all over again.
I simply couldn’t board the train back home defeated yet again. I also couldn’t bear the thought of remaining in this holding pattern for another few days while I sat waiting too far away from Allen and the boys. I could not wait any longer. After some pleading on my part and much consideration on his, Dr. Rosenwaks agreed to pursue the first option: Immediately begin the Follistim and proceed with caution. That night I lined up all the needles and vials of Lupron, Follistim, and the diluent to mix it in. I read and reread the directions, mixed the medication precisely, and carefully injected the Lupron and then the Follistim into my sore thighs, bruised from months of Lupron injections. The medication burned as I injected it, but I didn’t care. It felt so good to have forward momentum. Over the next week or two, Dr. Rosenwaks’s job was to achieve a balance between giving me enough Follistim to produce a considerable number of eggs (hopefully ten or more) without hyperstimulating me (associated with risks including nausea, difficulty breathing, and blood clotting, among others) and having to cancel the whole cycle. His sterling reputation is based on his expertise in these matters.
My last real study of genetics was in preparation for my sixth-grade science-fair project on Gregor Mendel. Despite my taking home first place, I was hardly an expert at age twelve, let alone now, at age thirty-two; but I understood that each fertilized egg had a 25 percent chance of having FA. Because the chance of any one being both healthy and an HLA match was merely 18.75 percent, the more eggs we tested, the greater the likelihood that we would beat these daunting odds. Although I hoped for twenty eggs, at this point I was so desperate that I would have settled for anything more than the one I could produce each month on my own.
The next day, Allen, Henry, and Jack finally arrived in New York City, where we spent a long weekend at the Helmsley Medical Tower Apartments for yet another $1,000. I waited for them in the lobby, and when I saw Allen pushing the double stroller through the large glass doors, I thought my heart would explode from excitement. Henry jumped out of his seat and ran into my arms. It had been six days since I’d seen him, but the way he held on to me, you would have thought we’d been apart for years.
Like he usually did, Jack followed his big brother’s lead and, though a little more slowly and clumsily, he also ran out of the stroller and grabbed on to me. Henry made room, allowing Jack space in my arms. Although brotherhood is often fraught with competition, Henry and Jack’s relationship seemed to escape that. Instead of viewing Jack as an adversary or worse, as an object of envy given his clean bill of health, Henry saw Jack as a best friend and, as such, someone to look out for. Their closeness was a source of joy for Allen and me.
After dropping off their bags and bundling up, we headed straight for Central Park. It was a crisp and sunny February day. Allen and I each grabbed a stroller handle, and we walked together to the carousel. The music was festive, the lights were bright, and the boys were happy. Henry climbed up onto the black panther, and we boosted Jack onto a white horse. The carousel began to spin. I was dizzy and happy. It felt great to be together again, absent the burden of fear and loneliness weighing me down in the preceding days.
From the hotel, I had easy access to the IVF clinic several floors below, and Henry could be admitted to New York–Presbyterian Hospital Well Cornell for an endocrine workup. He needed to be tested for a growth hormone deficiency; to undergo a hearing and vision screening; to have kidney scans; and he had to visit a neurologist, as well. Fanconi anemia can wreak havoc on all these systems. Henry was just over two at the time, and although he was developing normally, his doctors wanted to rule out any further complications. With each result, I held my breath. In every case, the news was good.
Henry’s tests required an overnight stay, so Allen and Henry slept in the hospital while Jack and I returned to the hotel several blocks away so I could go to my early morning appointment. These separations were difficult because those were the times Allen and I most needed to be together for emotional support.
First thing the next morning, I took Jack with me to the IVF clinic for my daily blood work and sonogram, and then we were to meet up with Henry and Allen. When we arrived at the hospital, Dr. Auerbach was already there. She told us that Dr. Hughes had a family emergency. His wife, Claudia, had been found to be ill with cancer after a long remission. We had grown very close with Dr. Hughes, and he and Allen had developed a particularly strong bond. He was such a wonderful, supportive advocate, doctor, and friend to us. Our hearts broke for him, and for ourselves.
Despite his own challenges, Dr. Hughes assured us that he would oversee our testing. That day, we learned the good news that Henry’s platelets had increased to 47,000—the highest they had been in months. Though they were still far below normal, they were well above the level of 10,000 that would necessitate a platelet transfusion and signal that we had run out of time. My ovaries were getting big and, succumbing to my desperation for encouragement, the doctors at Cornell predicted that I had ten or more eggs on each side. That night, the four of us went to my aunt and uncle’s house in Morristown, New Jersey, where we would stay until my egg retrieval.
Each day that February, I got up at five forty-five a.m., kissed my still-sleeping husband and children, and began the two-and-a-half-hour roundtrip drive into the city for a quick blood test and sonogram. Although I would return exhausted, I wanted nothing more than to spend my time with Allen and the kids. We took advantage of the snow on the ground and made snowmen. “I’ll make one of you if you make one of me,” Henry said. In the end, we made a family of four—Mommy, Daddy, Henry, and Jack, each adorned with grapes for eyes, a carrot nose, raisins for the mouth, and our hats and gloves, which made them cute, and us cold. Afterward, we warmed up over hot chocolate and movies.
We discovered local parks, wandered around Short Hills Mall, and played with Batman toys. Each evening the nurse called to give me my drug dosages. I took my injections, read stories to the boys, and fell asleep, only to start the cycle again. Nearly two weeks after arriving in New York, I was instructed to take hCG, this time to release the twenty or more eggs in my overfilled ovaries. As Allen injected the shot—a nearly two-inch needle into my skin (this was no allergy shot or tetanus booster)—I felt prouder of myself and my body than I had been years earlier, when I was much more athletic, following a hundred-mile bike ride or a twenty-mile run. With the help of our doctors, I believed that my body would do the impossible and remove the word “fatal” from H
enry’s disease.
Two days later, I had surgery to remove the twenty-four eggs I had produced, which were immediately united with Allen’s sperm in a miracle of science. That was the first time I met my nurse Ruby, a soft-spoken, kind woman. She held my hand in hers and comforted me with her smooth, deep West Indian–accented voice as I was wheeled into the operating room, and again when I awoke from anesthesia. It was as if she understood what was at stake and was personally invested in being there by my side as we intervened to twist Henry’s fate. That night Allen drove Henry and Jack home to Washington so I could rest and prepare for the next phase. As I did most nights throughout this cycle, I called Lisa Nash to tell her how we were progressing, both of us aware that it wasn’t only Henry’s life that was at stake.
The next day, we learned that eighteen eggs had successfully fertilized. If the statistics proved correct, we should get four or five Fanconi-free, perfect HLA matches—one or more of which could be Henry’s savior and (because our success would make it the Nashes’ turn), in a way, Molly Nash’s as well.
As I lay resting, overwhelmed at our good fortune, Dr. Hughes called from his office in Detroit to remind me of all the challenges we could face over the next few days, during which doctors at Cornell hospital would perform the embryo biopsies and Dr. Hughes and his lab staff would conduct the genetic testing. I wanted to cover my ears—the way Jack did when Henry was saying something he didn’t like—and bask in possibility, but Dr. Hughes was committed to ensuring that we were always well informed, so that we could make the best, most educated decisions. He carefully explained this war of attrition. Some of the embryos would not grow in the petri dish past the two-to-three-cell stage and therefore would neither be tested nor be able to produce a pregnancy. Others would not survive the cell biopsy required for the genetic testing. Then it was possible that the equipment might fail to deliver any results at all. Even if the equipment functioned properly, the results might not be definitive, meaning that the particular extracted cell might not give us the information about FA or HLA type that we so desperately needed.
Dr. Hughes was straightforward and prepared to talk until I was satisfied that I knew everything there was to know at this stage, which truthfully was more than I wanted to hear. Some of the issues Dr. Hughes raised are realities of IVF and PGD. Some embryos are simply not strong enough to survive even the natural process resulting in miscarriage, and others can’t withstand medical intervention. But much of what we discussed was simply part of life on the front lines of a medical breakthrough.
Despite all the preparation, the equipment and protocol had not yet been tested on a real case like ours. I called Allen to share my conversation with Dr. Hughes. Allen listened and then asked me if I had asked whether, if we had multiple healthy HLA matches, we could implant at least one female embryo. Of course, I hadn’t. His steadfast faith in our doctors and the promise of science blinded him to the fact that we were on the medical frontier. Despite everything we had already endured, he still thought it would be easy, and was already thinking about the gender of our new baby. I hoped that he was right, but I did not share his confidence.
I spent a day alone in New Jersey, waiting for Allen to return, trying not to overworry about the possibilities of failure. Thankfully, my job was demanding, and I had plenty of work to keep me occupied. The next day, Allen returned to New York and we went to Cornell hospital to speak with the embryologist, Dr. Kangpu Xu. We learned that he had successfully extracted two cells each from fourteen embryos, giving Dr. Hughes the opportunity to run two simultaneous tests on each embryo to increase his certainty with the results. There were still four embryos from which he had yet to extract cells for testing. We returned one hour later to learn that he had removed one cell each from two; the other two had ceased to grow.
Allen took the vials of thirty cells from sixteen embryos, which had been meticulously labeled, carefully packed in ice, and stored in a Styrofoam box. We walked out to the intersection of Seventieth Street and York Avenue and hailed a cab to take Allen to the airport, where he would board a plane and fly to Detroit. Dr. Hughes would be waiting, to take the cells to the lab without delay.
“Thank you so much for doing this for me,” I said to Allen. It had been my idea that he personally carry the cells on the flight to Detroit, despite his insistence—along with Dr. Hughes’s—that we could put the box on the plane and it would arrive safely. I didn’t believe that there was a pilot or flight attendant who could possibly appreciate the value of the contents in that bland white package in the way that Allen did. There was no way I was letting those cells out of our hands for even a minute. A cab pulled over. Afraid to put the box down, we didn’t even dare hug. I quickly kissed Allen. “I love you,” I whispered, as I stood alone on the sidewalk, watching the cab get lost in the traffic. Henry and Jack were home in Washington with my mother and father. For the time being, everything was out of my control.
I called Northwest Airlines three different times to be sure Allen’s flight had taken off and landed safely. As on so many previous days, sporting my running shoes, I started walking and followed the green lights through the streets of New York. I wandered aimlessly and quietly, as this was pre-iPod times, stopping for a piece of Godiva chocolate on Madison Avenue, always resisting the urge to wander into Baby Gap, though I did look in the windows. As the day passed, I got more and more anxious about the decisions we might have to make. Dr. Hughes had less than forty-eight hours to test the cells. If he had confidence in the HLA and FA test results, the decision would be easy: implant the one, two, or three healthy HLA matches; and freeze the others for future use. We flat-out dismissed our families’ and friends’ concerns about what in the world we would do with triplets. We were too focused on what we would do without Henry.
It was possible, however, that Dr. Hughes could be sure about the FA diagnosis or the HLA diagnosis, but not about both. It was possible that we could be faced with a decision to implant embryos that were definitely HLA matches, but where the disease status was unclear. I wasn’t sure I could bear yet another trimester of pregnancy not knowing whether our baby had FA. It was possible that if we took that chance and implanted two embryos, I could get pregnant with twins, both of whom would be HLA matches, but one of whom could have FA. Then we would have to consider having selective reduction, a process where the growth of the diseased fetus could be terminated while preserving the remaining healthy one. What if we did that and they terminated the wrong one? Walking the streets of New York, I thought about how I had once imagined my life as a parent; how simple I thought it would be back on that October day six years earlier, when Allen slipped the Laurie Will You Marry Me? Please Say Yes! mix tape into the tape deck.
Up until Henry’s birth, my life had been so easy. For the most part, I made the team, secured the invitation, got the guy. My life was like a piñata—good things just kept coming out. Most days I had woken up with a feeling of excitement, as if something good was going to happen and I had to get up and get out of the house to find out what it was. One of those days, Allen and I decided to wake up together every day and see what great things we could make happen if we combined our optimism, energy, and appetite for fun. That our first big production, our first baby, came with so much hardship, so early in our relationship, was still incomprehensible to me.
Henry’s prognosis, his open-heart surgery, these high-stakes attempts at PGD brought out unfamiliar emotions—fear, helplessness, vulnerability, depression. We were unpracticed at discussing such complex emotional matters with each other, or with our friends and family. Our hardship quickly revealed new and uncomfortable needs: money to help pay for medical treatments and to support research; people willing to sign up as potential bone-marrow donors; family and friends to provide practical, day-to-day help and extraordinary and enduring amounts of comfort and compassion.
How the hell had my life gotten so complicated? I longed for the day when I could take the kids to the park, have a picnic,
and worry about what they ate for lunch or where I should send them to summer camp. I longed for the day when I could stop worrying about platelet counts, CBCs, and HLA matches.
Late that night, Allen returned from his trip to Detroit. Having seen Dr. Hughes for the first time in a year and a half doubly reinforced his confidence. Henry may have been Batman, but when Dr. Hughes donned his lab coat, to Allen he was none other than Super-man. Two days later, we went to Cornell hospital three times for our embryo transfer. Twice we were sent away and told to return later, as Dr. Hughes had not yet called Drs. Rosenwaks and Xu in New York with the test results. Sometime after six p.m., we returned to the hospital and I changed into a hospital gown, slippers, and a hairnet so I would be ready as soon as they got the call from Dr. Hughes. The embryos had been growing in a lab outside my body for several days, and it was time to put them back in to ensure that they would develop into a baby.
After I dressed, Allen and I took a seat in the surgical waiting room, which, with its pink walls and circular shape, felt to me like a throwback to the 1950s. A few other couples had come and gone, and it was starting to get late. Finally, Dr. Xu, the embryologist, entered.
“Mark Hughes wants to talk to you,” he said. Allen got on the phone right away. I could tell by looking at his face that something was wrong. Allen hung up and took my hands.
“Just tell me,” I said.
“Of the sixteen embryos, two are perfect HLA matches.”
“That’s great!” I said, feeling a surge of enormous relief that in a flash was tempered by the sad look in Allen’s eyes. “That’s great, right?”
“Laurie. I’m so sorry. They both have Fanconi.”
I collapsed on the floor, naked except for the gown. I couldn’t bear to look at Allen. I couldn’t bear to get up. So I just lay there, curled around myself, wishing I could get smaller and smaller until there was nothing left.
Saving Henry Page 8
