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Looking at vivacious, outgoing college senior Marissa Ayala today, it seems several lifetimes ago that she set the medical world on its ear when she was born for the express purpose of providing bone marrow for her leukemia-stricken sister, Anissa.
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Time magazine featured the sisters on the cover of a 1991 issue that debated the ethics of “baby farming.” Critics howled, and parents Abe and Mary Ayala found hate letters in their mailbox. Even today, Marissa hears the whispers of people who know her background story.
But the 21-year-old Southern Californian said Friday that she and Anissa are as close as any two sisters can be — and that she lives in a family full of love and gratitude.
“People are entitled to their own opinions, but I am so glad that I am in this family,” Marissa told Meredith Vieira on TODAY’s “Good News” segment. “I could not have asked for a better family, so I’ve never questioned it.”
Death sentence at 16
Still, many others did at the time. Anissa Ayala was 16 when she developed lumps on her ankles, followed soon by severe stomach pains. Her parents took her to the hospital, where they got the worst news imaginable — Anissa had a rare form of leukemia, and if she didn’t receive a bone marrow transplant to replenish her red blood cells after her rounds of radiation and chemotherapy, she would die.
Anissa’s older brother Airon wasn’t a match; neither were her parents. An unrelated matching donor was found, but backed out. Abe and Mary made a fateful decision: to try to conceive another child in hopes of producing a match for Anissa.
The odds were heavily against them. Mary Ayala was 42 and her chances for a successful pregnancy were put at 40 percent. Abe had to have his vasectomy reversed. And on top of all that, there was only a 23 percent chance the new baby would be a match for Anissa. “Everything had to align perfectly,” Anissa’s doctor, Stephen Forman, told Vieira.
Yet align they did: Seven months into the pregnancy, Abe and Mary learned their child could be a successful donor. And 14 months after her April 1990 birth, doctors at the City of Hope National Medical Center in Duarte, Calif., inserted an inch-long needle into Marissa and fed the marrow into Anissa’s veins.
Anissa improved quickly; medically, she has never had to look back. “I am totally cancer-free; it’s been amazing,” she told Vieira on TODAY Friday.
But the landmark case put the family under a microscope: National media attention focused on a baby far too young to give her consent being a donor for a family member, and Time called Marissa a “biological resupply vehicle.”
For her part, Marissa has never been fazed by critics who question why she came into this world. “They don’t know my family, and they probably don’t put themselves in our shoes and ask themselves, ‘Would I do this for my child?’ ” she told Vieira.
Everything went right
Appearing with the sisters on TODAY, medical correspondent Dr. Nancy Snyderman admitted that she was among the initial detractors: “It crossed so many medical ethical lines.
“I remember thinking early on, I was very critical of this, as a doctor,” Snyderman recalled. “Then I thought, ‘Well, as a mother, would I do it?’ And then I thought, ‘Yes, I would.’ ”
Today the Ayalas are one big — and healthy — family. Snyderman called it “a case where the planets aligned and everything that could have gone wrong didn’t, and everything that could go right did. But it did turn medical ethicists upside down.”
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One legacy of the Ayala case would be difficult for even the harshest critics to condemn: The intense publicity surrounding Marissa’s birth prompted some 100,000 people to volunteer for bone marrow donor lists since. “That legacy has carried on for 20 years,” Forman told TODAY.
As for Anissa, she told Vieira she “was thrilled” at the time when she learned her mother was going to try to have a baby — but happier still that her mother was bringing new life into the world beyond saving her own life.
Video: Sisters recall controversial medical transplant (on this page)“I wanted my parents to have something that they could focus on, that they could carry on with,” she said. “I thought another child would create that for them. They were so focused on me, what was going to happen, and it was just time to take the focus off me. And when I found out it was a little girl, I was thrilled.”
With their wide age difference — Anissa is now 39 — Marissa admits she sometimes thinks of her big sister as a second mom, yet the pair laughed in talking with Vieira about their occasional sibling spats.
But Marissa was serious when she described the bond she shares with Anissa. “Without her and her sickness, I would not be here,” she said. “And without me being a perfect match for my sister, she would not be here as well.”
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