Anissa Ayala had always hated hypodermic needles; even the thought of going to the doctor made her nervous. So when mysterious lumps appeared around her ankles two years ago and she began experiencing cramplike stomach pains, the athletic teenager from Walnut, Calif., decided not to tell her parents. “I was scared to go to a doctor,” Anissa recalls. “My main fear was that I would have to get a blood test”
Soon afterward, Ayala discovered that having blood drawn would be the least of her worries. On Easter Sunday 1988, just a few days after she celebrated her 16th birthday, her agony reached the point where she realized she needed medical care. Hospital tests were performed, and the doctors came back with a grim diagnosis: Anissa was suffering from chronic myelogenous leukemia—a disease that would kill her in three to five years unless a donor could be found for a bone marrow transplant.
Testing of Anissa’s extended family, including her mother, Mary, 43, her father, Abe, 45, and brother Airon, 19, failed to locate a suitable donor. A search by the National Bone Marrow Donor Registry for an unrelated transplant candidate—the odds against a successful match are 20,000 to I—also failed. So, in desperation, Mary and Abe Ayala, who own a speedometer-repair business, seized upon a final alternative. Told that the chances of a sibling marrow match were one in four, they decided to try to conceive another child. Little did they know that their gamble to save Anissa would catapult them into a heated medical-ethics controversy and raise troublesome questions about the rightful reason for having a baby.
Not that bringing another Ayala into the world would be easy. Aside from the couple’s relatively advanced age, Abe first had to undergo surgery to reverse a vasectomy performed 16 years earlier. But he had the operation, and just six months later Mary became pregnant Then came more good news: The Ayalas learned from amniocentesis and tissue-typing tests that bone marrow cells of the baby-a girl to be born in April-will almost certainly be compatible with Anissa’s.
“This is our miracle baby,” a jubilant Abe Ayala told reporters last week.
“We are all very, very blessed,” sobbed his wife.
Those who knew only that the Ayalas had conceived for the purpose of finding a marrow match, however, were troubled by the implications of the pregnancy. “What they’re doing is ethically very troubling,” said Alexander M. Capron, a professor of law and medicine at USC. “The major objection,” says Dr. Arthur Caplan, Director of Biomedical Ethics at the University of Minnesota in Minneapolis, “[is that] it’s wrong to have a child just to have a donor.”
For their part, the Ayalas insist that their baby was conceived in a spirit of love. “She’s my baby sister, and we’re going to love her for who she is, not what she can give to me,” says Anissa. Mary Ayala believes the baby has already proved her healing powers, regardless of the success of the transplant “She has given Anissa more of a reason to live,” she says. The special circumstances of her conception are underscored by the name the family has chosen for her. Marissa, a combination of Mary and Anissa.
From the outset Anissa’s illness has been a burden shared by her family. Though Anissa herself remained remarkably calm—”I wanted to know everything,” she says—her parents were panic-stricken. “The first thing you think is, ‘She’s going to die,’ ” says Abe Ayala “I started getting flashbacks to when she was a little girl. I remember going into her room at home when she was in the hospital and thinking that maybe she’d never come back. It’s really hard on the heart”
Luckily, Anissa responded well to initial chemotherapy treatments and was able to leave the hospital after only nine days. Compared with many leukemia patients, Anissa has been fortunate so far. She has not had to undergo radiation treatments or massive chemotherapy. Still, the possibility of her premature death has cast a shadow on her and her family. “At the beginning, the stress was really bad,” says Mary. “I was trying to stay up for her, and she was trying to stay up for me. She would look at me, and I would start crying.” Inevitably, there are moments of fear. When Anissa is plagued by nightmares, she sleeps with her parents in their king-size bed. “I’ll sing to her,” says Mary, “or read the Bible to her.”
That kind of support was especially necessary after a heartbreaking episode last October, when the UCLA Medical Center contacted the Ayalas to tell them a perfect marrow match had been found for Anissa. But the donor backed out at the last moment. Apparently, he had been willing to give blood but not to go through the more complex and time-consuming procedure of donating bone marrow. “Anissa was devastated,” says Mary. “She took it personally, and it was a good two weeks before she got over the trauma of it.”
Fortunately, eight months earlier, Mary and Abe had considered having another child—at an age when most of their friends were having grandchildren. “I had a dream,” says Mary. “God told me everything was going to be okay. I woke up and told Abe, ‘God told me to go ahead and have a baby.’ ”
Although the prognosis for Anissa is favorable now, she is hardly out of jeopardy. Anissa’s doctors hope to obtain stem cells from the baby’s umbilical cord at the time of birth, a painless procedure for the infant. When Marissa is 6 months old, those stem cells will be combined with additional bone marrow cells that have been taken from the child. They will then be injected into Anissa’s body, where the transplant has a 70 percent chance of success. Should the transplant fail, or if Anissa’s condition deteriorates seriously between now and next fall, she will need to find another donor.
Meanwhile, Anissa has found another source of hope in the Life-Savers Foundation of America (900-990-1414), a group that raises money and recruits donors for those in need of bone marrow transplants. “Anissa is a really effective spokesperson,” says Mary. “She’s not afraid to go up to people and say, ‘I’m dying, and I need your help.’ ” Though she continues to project remarkable optimism, Anissa has been robbed of some of the simple pleasures of being a teenager. She broke up with her boyfriend recently and despairs of finding another. “I want a boyfriend, but I can’t stand how immature a lot of the guys I meet can be,” she says. “I have a totally different outlook on life now.”
After graduating from Walnut High this spring, Anissa hopes to attend Azusa Pacific University and study to become a psychologist or a social worker specializing in treating cancer patients. But even if a transplant from her new baby sister cures her leukemia, she is resigned to surrendering one childhood dream. “I’ve always wanted to get married early and have a baby,” she says wistfully. “But now I figure this baby is enough. I mean, she could be like my own.”
—David Grogan, Nancy Matsumoto and Kristina Johnson in Los Angeles