In the Fall of 2000, Denver’s Lisa and Jack Nash genetically engineered a baby in an effort to save their dying little girl. Pastors and pundits said it was the first step down a stem-cell-paved road to Hell. Five years later, the Nashes give us an exclusive look at Heaven.
Dozens of children ran toward a lake with handmade boats tucked under their arms. Some of them appeared fit, but all were sick and many were dying. A few especially weakened children walked behind. Each child had written a wish on a piece of paper and placed it inside his or her boat. At the lake, they gave their boats a little push and watched them glide away. Jack and Lisa released their vessel along with the others, but Molly was too young—not yet 2—to grasp the significance of letting hope ride.
It was 1996 and the Nashes were at Camp Sunshine in Maine, where each year FA families gather for a week at the campground in the town of Casco. The children giggle during sleep outs and magic shows and give each other "high fours" on the volleyball court while researchers and other experts hold seminars for parents.
Also attending Camp Sunshine that summer was Dr. John Wagner. Wagner did not watch the children play; he tries to see them only as patients. It's a defense mechanism—while it may mute his joy after the successful surgeries he performs on kids with FA, it also makes the deaths easier to endure. He had treated and performed bone marrow transplants on many of the kids at Camp Sunshine. As the scientific director of clinical research in the Marrow Transplant Program at the University of Minnesota, Wagner has performed more bone marrow transplants on FA patients than any other doctor in the country. If any of the parents asked him to explain what drew him to FA, he would have said simply, "It was a disease that was virtually hopeless." In the FA cases he studied, Wagner recognized that transplants from a related donor—a brother or sister—were critical to success. He teamed up with cutting-edge reproductive geneticist Dr. Mark Hughes, who was director of molecular and human genetics for Georgetown University and worked for the National Institutes of Health. Together, the doctors were thinking of ways to push the envelope of science in an attempt to outsmart natural selection. They wanted to begin genetic screening for the perfect bone marrow donor. The ideal match would be A) a healthy sibling embryo and B) a suitable tissue match.
Wagner understood the risks, for his patients and for himself. He knew that some critics would view the genetic testing as crossing a moral line, but too many kids were dying after transplants. Wagner talked about his perfect-donor scenario during a seminar at Camp Sunshine in the summer of 1996. In the audience, Jack and Lisa grasped hands tightly as Wagner described a series of tests that could dramatically increase the chances that a couple's next child would be healthy and a bone marrow donor. Wagner emphasized these two existing tests had never been used together, but science was moving in that direction. As she listened, Lisa told herself: "I'm going to do this."
The process Wagner described is called Preimplantation Genetic Diagnosis (PGD), and it entailed testing multiple embryos created by in vitro fertilization. One cell of each days-old embryo would be screened for Fanconi anemia's genetic code. Affected embryos would be discarded, while healthy embryos would be further analyzed to see if the tissue type was a match for the patient in need of transplant.
The Nashes considered the fact that the testing involved controversial embryonic research—and would involve discarding diseased embryos. According to the teachings of their Jewish faith, life doesn't begin until 40 days after conception, and the tests would take place after only three or four days. Besides, they thought, if science was offering the promise of a miracle, wasn't that better than standing by and watching their daughter die?
The only alternative to PGD was naturally conceiving a healthy child who was a suitable donor (an 18.8 percent chance). However, only a prenatal test 10 weeks into the pregnancy could check for FA and determine if the fetus was a bone marrow match. For the Nashes, that was irresponsible. After all, couples often aborted upon learning the baby had the disease. The way Jack and Lisa saw it, getting pregnant when there was a 25 percent chance the child would be afflicted with FA was not a gamble they were willing to make. "We didn't want to give a kid a death sentence or have an abortion," Jack says. "For a long time those were our two options." After the seminar, the Nashes fought through the crowd to Wagner and volunteered on the spot.