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The Made-to-Order Savior, cont.

By LISA BELKIN
Published: July 1, 2001

Underneath it was the question, "Can we help save Henry's life?"

Allen was certain that this attempt would work. There was bittersweet poetry in the timing: death preceding life and preventing death.

But when Hughes called the Strongin-Goldbergs in New York, his news was not the stuff of poetry. There was only one match. It did not result in a pregnancy.

Attempt No.6 took place in June 1999. Twenty-eight eggs, two healthy matches. No pregnancy. Attempt No.7 came in the middle of Hurricane Floyd. Allen drove his Styrofoam box through the eye of the storm -- 1,200 miles in 26 hours -- and delivered the cells, alive, at 2 a.m. Laurie became pregnant, then miscarried.

Their eighth try took place in February 2000. Laurie was in New York, at the clinic, the morning that Allen raced Henry to the hospital with pneumonia so serious doctors warned it could kill him. Laurie agonized over whether to come home (canceling the in-vitro cycle) or stay where she was. If she left, she was certain Henry would die, because he would have lost this chance for a sibling donor. If she stayed, then she was equally certain that Henry would die -- of pneumonia, in a Georgetown hospital, without his mother.

She stayed. Henry received two blood transfusions and was pumped full of three intravenous antibiotics. Laurie produced 21 eggs and only one implantable match. "I did not get pregnant," she says, "and I still haven't recovered from the experience."

As the Strongin-Goldbergs dragged themselves from one attempt to the next, the technology of bone-marrow transplants was changing. Specifically, Wagner was testing a new method of removing T-cells from donor blood. T-cells are the ones that recognize the host as foreign, leading to graft-versus-host disease. Simultaneously, Wagner was using fludarabine, an immunosuppressant that appears to encourage the new cells to engraft, or take root. Based on a tiny sample of patients, Wagner's best guess was that these adjustments to the protocol showed promise, apparently increasing the odds of surviving an unrelated bone-marrow transplant from 30 percent to 50 percent in a Fanconi anemia patient. This was still far lower than the 85 percent odds of a sibling cord-blood transplant, but better than it had been before.

Laurie went through one last, disappointing in-vitro cycle, then she and Allen grabbed those new 50-50 odds. Wagner warned that it was time to stop, and they knew, from looking at Henry, that he was probably right. Henry had had two platelet and two red-cell transfusions in the past two months, and he had been on Anadrol, a steriod to boost his blood counts, for two and a half years. There comes a point at which a child is too sick for a transplant, and Henry, like Molly, was all but there. In two and a half years of desperate trying, Laurie had 353 injections, produced 198 eggs and had no successful pregnancy. During the same time period, Henry's platelets fell from a high of 103,000 to a low of 10,000.

"We gave it all we had," Laurie wrote when her last pregnancy test was negative and the family was leaving for Minneapolis, for Henry's transplant. "We worked with the world's best doctors. We hoped. We believed. We were brave. We persevered. And despite all that it didn't work. I am left with my belief system intact. I believe in love and science. Nothing more, nothing less."

A bone-marrow transplant is a medical resurrection. First doctors all but kill a patient; then they bring him back to life. Treacherous and risky, in the end it all comes down to one squishy plastic bag of pale brown liquid which could easily be mistaken for rusty water from a tap. Henry's bag of marrow was collected from an anonymous donor somewhere in the United States on the morning of July 6, 2000, and was flown to the Fairview-University Medical Center, arriving in Room 5 of the bone-marrow transplant floor around dinnertime. A nurse came in with a Polaroid, snapped a few pictures, then added the bag to Henry's leafy IV tree. There was no blaring of trumpets, no rolling of drums. From 8:15 to 8:30 Central Daylight Time, the fluid dripped soundlessly.

Molly Nash's bag was collected with more drama. Lisa's pregnancy had managed to hold. For months Molly's baby brother had been trying to arrive prematurely, and now that he was due, he didn't seem eager to arrive at all. By the evening of Aug. 29, Lisa had been in labor for 52 hours, insisting she be allowed to continue because she knew that more cord blood could be collected during a vaginal birth. Finally, when it looked as if the baby was in distress, he was delivered by C-section. Dr. Strom -- his godfather -- collected the cord blood. Lisa cradled both the newborn Adam and the warm intravenous bag in her arms.

"God created Adam in his image," Lisa says, explaining how she chose her son's name. "Adam was the first. And from Adam -- from his rib, which is full of marrow -- God created woman, which is fitting because God used our Adam to give Molly a second chance at life."

When he was 9 days old, Adam flew with his parents and his sister to Minneapolis. Molly settled into the room down from Henry's for the standard four-month stay -- a surreal time when it seems as if every child in the world is having a bone-marrow transplant, because every child that you see is. Molly went through all that Henry had gone through a month before her, and yet everything was different. She had a higher chance of engraftment and a far lower chance of rejection. Her parents were rubbed emotionally raw watching her suffer in order to live. But then they looked at Henry, whose parents feared he was showing early signs of graft-versus-host disease -- something Molly would almost certainly never get. They looked beyond Henry, too, at the eight patients who died in the bone-marrow transplant unit during Molly's endless summer.

In the end, Molly's life was saved. That is the Nashes' answer to people who question their right to manipulate nature. Their right springs from the difference between 30 percent and 85 percent; the difference between Molly and Henry. That is also their answer to those who would urge the government to ban all embryo research because it harms unborn children. The research, they say, saves children like Molly.

"We did what we needed to do to keep our daughter from dying," Lisa Nash says. "That is what any parent would do. Isn't this what parents are supposed to do? How can anything be wrong with that?"

Yes, ethicists say, it is exactly what any parent would do, and that is why it is troubling. Parents are being asked to make a choice not only on behalf of their living child, but also on behalf of their unborn child, and that can be an impossible position when the choices get hard. If Molly were closer to death, for instance, would her parents have terminated the pregnancy and used stem cells from Adam's fetal liver to save her?

"We know people will do anything to save their child," says Jeffrey Kahn, an ethicist at the University of Minnesota, where there was much debate about the decisions of the transplant team at the hospital next door. "Now we are learning what 'anything' really means."
Susan M. Wolf, a professor of law and medicine at the University of Minnesota, says she believes that this case is emblematic of the whole of reproductive technology, which she describes as "a multibillion dollar industry based solely on consumer demand." While it might seem logical in each isolated case to let the parents decide, all those single choices add up to a hodgepodge of technology scattered throughout private clinics and laboratories, with no one authorized to say no.

Wagner and Strom agree. They say they do not believe that they, or any other individual doctor, should have the responsibility of sorting through this thicket alone. "As the technology progresses," Strom says, "I see the possibility that someone will come to us and say: 'While you're screening for Tay-Sachs, how about making sure he's not going to have heart disease, too? And while you're at it, why not check for the gene that predisposes him to lupus or makes him immune to H.I.V.?"'

"It has the potential to be abused," agrees Wagner. But the response to that potential, he warns, should not be to ban the research or suspend federal financing of the procedure. "It's not going to go away," he says. "We can't put our heads in the sand and say it doesn't exist. I have a stack of requests this high from all over the world, couples asking if they can come use this technology."

Compounding the problems caused by the current ban on federal financing, he says, is the accompanying lack of federal rules. "It's all been forced into the private sector," he says, "where there are no controls. There should be controls. There should be limits. It is up to us, as a society, to decide what they are."

Since her transplant, Molly Nash has gone back to school. More accurately, school has started to come to her, but her visiting teacher has to wear a mask during lessons. Her ballet teacher comes for in-home classes, too, and Molly twirls and plies and giggles. Her hair is beginning to grow back. Instead of taking 44 pills every day she only takes 10. She is still fed through a stomach tube that her mother hooks up four times a day, and she doesn't have much of an appetite, which is characteristic of Fanconi anemia. The transplant did not cure her of that disease; it merely erased her risk of developing imminent leukemia. She is still likely to suffer Fanconi's other complications, particularly cancers of the mouth and neck. But those will not show themselves for many years, and, her mother says, "maybe they will have a cure by then."

Henry Strongin Goldberg has been ill almost since the day he left the hospital in Minnesota. While Molly's platelet count is 381,000, Henry's is 15,000. He spent months looking yellow and feeling miserable, moaning instead of talking, the result of a near fatal liver infection that is common in transplant patients because of the drugs they are given to suppress their immune system.

In January, for the first time in his tortured life, his parents were struck full force by the thought that he was dying. "All I can think about," Allen said then, "is how much I'll miss him."

Since then, things have gotten even worse. Allen lost his job at an Internet start-up in January, and although he is now working again, the family has burned through its savings. Laurie, who takes home $600 every other week, has spent months sleepwalking through work, hanging on partly out of a need to have one foot tenuously in the real world but also because Henry needed health insurance. Henry's liver slowly improved, but he then began to lose weight at an alarming rate -- 20 percent of his body weight within weeks -- and his skin began to disintegrate, turning red, scaly and raw. Several painful skin biopsies were inconclusive, suggesting that this was either an allergy to a medication or a sign of graft-versus-host disease.

While Henry was at the clinic having his skin examined, one doctor noticed that he was dragging his left leg when he walked. Two weeks later his left side became so weak that he could not lift himself to a sitting position in bed. He was rushed back to Minneapolis, where a scan showed a mass of unknown origin in his brain. Doctors operated but were unable to determine the cause. Whatever it was, it may have spread to his chest. Just last week, Henry was rushed to the hospital again -- his sixth hospitalization in the past 12 weeks -- where doctors found lesions in his lungs.

Of the 21 Fanconi patients who have received transplants within the past two years at Fairview under the new drug protocol that gave the Strongin-Goldbergs so much hope, 13 have survived so far. Of those, Henry is in the greatest danger. The first anniversary of his transplant is this coming Friday, a milestone that no longer seems like a victory.

What might have been another red-letter day will come in October, when the Nashes and the Strongin-Goldbergs had planned to meet in Disneyworld. The Strongin-Goldbergs will not be there. After years of technology and intervention, Laurie became pregnant the old-fashioned way, and her baby is due this fall. Tests show him to be a healthy boy who is not an H.L.A. match for Henry.

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