Saving Henry (9 page)

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 Henry's disease.

 

T
wo 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.

 

F
or the next six months, we waited. Claudia Hughes was fighting for her life and Dr. Hughes was at her bedside. He also wanted to spend time understanding what had happened with our case to see what he could learn to improve the outcome the next time. In the meantime, we continued to organize bone-marrow drives and to try to convince the insurance company to pay for our PGD attempts. Initially they refused to cover PGD on the basis that they didn't cover treatment for infertility. When we pointed out that our two children were proof that we weren't infertile and that they should cover PGD as a bone-marrow donor search, they reiterated their refusal to cover treatment for infertility and added that they cover only donor searches outside of the family. Despite the letters we submitted from our doctors who, among other things, explained that the cost of a transplant with the marrow of a stranger far exceeded (perhaps by more than 100 percent) the cost of one with the perfect sibling donor
produced through PGD, the insurance company steadfastly refused. It was as if they had never heard of PGD. I found that if I submitted my bills for everything except the $250 quarterly fee for frozen embryo storage, sometimes they would cover blood tests and sonograms; other times, the cost of the anesthesia. It didn't amount to much, but we would take what we could get, and our extended family made up the difference, for which we are eternally grateful.

Despite the devastating results, the progress we had made in our second PGD attempt combined with the fact that we had no other options solidified our belief that it was well worth waiting for a third try when Dr. Hughes was ready for us. In the meantime, we were hardly going to sit around and let life pass us by. In July 1998, the four of us, along with my parents and Allen's parents, traveled to a small fishing village in Galicia, Spain, to attend the wedding of Allen's best friend, Bill Delaney, to his fiancée, Cristina Alvarez.

From the moment we stepped onboard the flight to Spain, we got the vacation we had been hoping for and so desperately needed. Henry spent the six-hour flight running up and down the aisles, making friends and on occasion getting someone to play Go Fish with him. Compliments of the pilot, who was a friend of Cristina's, my dad—who, in addition to being a lawyer and sailor, is also a pilot—was invited to sit in the cockpit for the takeoff from Dulles Airport. The trip would prove to be filled with similar treats for all of us.