Edition: U.S. / Global

The Made-to-Order Savior

Published: July 1, 2001
(Page 7 of 10)

He immediately discovered what Hughes had struggled with for years -- the ''nightmare'' caused by the near-identical patterns in the H.L.A. portion of Jack and Lisa's DNA. But he and his team tried something new -- they looked farther down the strand, beyond the three known genes, to a spot where it was easier to differentiate one parent from the other. This increased the risk of being wrong, but Molly's blood counts were dropping, and they did not have time to waste. ''This isn't what we want to do, but it will probably work,'' Strom told the Nashes two months after they first met.

It is one thing to screen embryos; it is another to become pregnant, and adding H.L.A. screening to Fanconi anemia screening lowers the odds even more. Only 1 in 6 blastocysts is likely to be both healthy and a matched donor, and that one might not be the quality that the reproductive endocrinologist would have chosen under ideal circumstances. Lisa spent all of 1999 trying to defy those odds. In January she produced 12 eggs, 2 of which were healthy matches; she became pregnant, then miscarried. In June she produced only four eggs, one of which was a match but did not result in a pregnancy. In September she produced eight eggs, six of which had Fanconi anemia; the single healthy match was implanted, but again, her pregnancy test was negative.

In October the Nash family traveled to Minneapolis for Molly's twice-yearly checkup with Dr. Wagner. Her platelets were down to 10,000. In every measurable way she was failing, and she needed a bone-marrow transplant. ''You have to stop,'' Wagner told her parents. It was time to proceed with a transplant from a nonrelated donor. ''There comes a point where I have to say: 'It's over. You've done it. You've done the best you could.'''

He began to search for a donor. Lisa and Jack went ahead with the in vitro that had been scheduled for December. ''I couldn't hear the word no,'' Lisa says. ''No' meant Molly could die.''

Because they knew it was the last try, and because they needed to feel certain that they had done the best they could, the Nashes insisted on one change of procedure for this final try. It troubled them that Lisa was producing so few eggs per cycle, and they wondered if a different in-vitro fertilization clinic might do better. They approached Dr. William Schoolcraft, an infertility doctor in Colorado known for pushing the envelope. He changed Lisa's hormone regimen and in December 1999 retrieved 24 eggs from her ovaries. For two days the Nashes fantasized about twins and even triplets. Then Strom called to say that there was only one match.

It all came down to one embryo that, statistically, had less than a 30 percent chance of taking hold and staying put. ''All it takes is one, all it takes is one,'' Lisa reminded herself as she drove to Dr. Schoolcraft's office nine days later for a pregnancy test. Minutes after she left, her cell phone rang.

''You're pregnant,'' said the nurse on the other end.

It was too soon, however, for a happy ending. And indeed, seven weeks into the pregnancy Lisa had just gotten out of the shower when deep red blood began flowing down her legs. The drive to Schoolcraft's office was a blur, but the memory of the picture on the ultrasound screen is vividly clear: a large gap where the placenta had separated from the uterine wall, and the flub-dub pulses of a tiny, living, beating heart.

Lisa went home and went to bed. She was permitted to get up three or four times a day to use the bathroom and once a week for an appointment with Schoolcraft, nothing more. Every time she stood up she began to bleed. Molly, too weak to really play, was on her own manner of bed rest, and mother and daughter spent entire days lying upstairs together.

In March, Molly's blood tests showed signs of pre-leukemia. Wagner sent more data to the national bone-marrow bank, escalating his search for an unrelated donor. In April, Molly's platelets fell to 3,000. She began to need blood transfusions but fought whoever tried to insert the needle; one particularly rocky weekend Strom flew to Denver from a business meeting in Los Angeles, because he was the only one Molly would permit to start the IV. April became May; May turned to June. Along the way, Lisa asked her doctors what could be done should she spontaneously lose the baby. They began to discuss whether stem cells could be harvested from a fetal liver. And all the while, Lisa was still bleeding -- clawing her way through the pregnancy, trying to hold onto her baby while holding off her daughter's transplant.

Back when the Nashes were deciding whether to go ahead with Molly's transplant or try somehow to wait until summer, the Strongin-Goldbergs were making their own impossible choice: whether or not to give up. Their optimism back in August 1998, when they had three healthy embryos, had long since faded. That in-vitro attempt did not result in a pregnancy. Neither did attempt No.4, in November, when 30 eggs failed to provide a single healthy match.