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.
This article won first place in the Maggie Awards feature category in 2006.
Everyone in the delivery room expected to hear the primal wail of a healthy newborn—that unmistakable sonic boom of a life beginning. Instead, when Molly Rose Nash entered the world on July 4, 1994, she cried a sickly whimper. Already, she was dying.
She weighed 5 pounds, 2 ounces in the outstretched hands of the immediately concerned obstetrician. Hunched behind the doctor, the new father, Jack Nash, craned his neck to see his daughter; the color drained from his face. Oh my God, he thought. There was a momentary quiet, filled only with the hospital machines' incessant beeping, then all hell broke loose. Nurses ran in and out of the room, yelling about baby Molly's hands and forearm. Someone said something about missing thumbs. Lisa Nash, feet still in the stirrups, struggled to lift herself. She saw bloody sheets but couldn't see her baby. "Where is she?" she shouted. "What's wrong?" Lisa saw the obstetrician's face. At the end of the birthing table, framed by the stirrups, his cheeks were wet with tears.
Lisa is a Neonatal Intensive Care Unit (NICU) nurse; she'd been on hand for thousands of deliveries. She'd seen babies born sick. This time, though, she was the mother and it was her baby—her firstborn. "Where is she?" Lisa shouted again. Out of her sight, behind a wall of nurses, Molly was wiped clean and rushed to the Intensive Care Unit.
Jack and Lisa knew their baby would be small, tiny even—that was plain from the 20-week ultrasounds—but two prenatal tests for chromosomal abnormalities assuaged their fears that the small stature was caused by an illness. The ultrasound tests were also when the Nashes found out they were having a girl. A co-worker gave Jack and Lisa a tiny pink cap to take home. They'd pull it out, rub it between their fingers. They both loved the name Molly. Knowing the sex and name made it all so real. Jack and Lisa couldn't wait to meet their little girl and put that hat on her head. They couldn't wait to be a family.
Now Lisa was on her back in a Rose Medical Center birthing suite, horrified and anxious. Finally, a nurse placed Molly in Lisa's arms. Lisa cooed and held her baby daughter close, studying the round face and tight-knit eyes. With an unsteady hand, Lisa gently unwound the blanket to see the rest of Molly: Her right arm was stunted and bowed, one hand was missing a thumb, and on the other there was a fleshy tab of skin where a thumb failed to root. What Lisa couldn't see was even more heartbreaking: Molly did not have hip sockets, there were two holes in her heart, and she was missing part of her brain.
"Get the book!" Lisa shouted to someone, anyone in the birthing suite.
She wanted Smith's Recognizable Patterns of Human Malformation, the NICU nurse's bible. During Lisa's four years of working at University Hospital, "the book" was the first thing she reached for when a baby was born malformed. Now, knees in the air, Lisa frantically skimmed the pages, looking for Molly's symptoms, seemingly oblivious to her obstetrician seated at the end of the birthing table, stitching her up.
Lisa came across Fanconi anemia (FA), a disease she'd never heard of, and on that page she found a face like Molly's staring back. Same apple-shaped head, same eyes, the same hand and arm abnormalities. FA is a genetic disorder that causes bone marrow failure, leukemia, and usually death in early childhood. Healthy bone marrow creates cells that supply oxygen to the body, fight infection, and clot blood; in the case of FA, cells go awry and leukemia sets in. Not all of the symptoms of FA are so obvious. Some who have it show no outward signs until their bone marrow fails. Relying on mother's intuition and her years of medical expertise, then and there Lisa concluded Molly had FA. When the pediatrician walked into her hospital room, Lisa cut through the niceties: "Molly has Fanconi anemia." The doctor dismissed Lisa's diagnosis. It's extremely rare, he said. He'd never seen a single case.
A bone marrow transplant, in which diseased cells are killed off and replaced with new donor cells, is the only cure for progressive bone marrow failure. But the procedure is risky at best. When Molly Nash was born, the success rate of a transplant from an unrelated donor was a dismal 18 percent. However, under the right circumstances, the success rate for transplants from a brother or sister was as high as 65 percent.