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Video: Sisters recall controversial medical transplant

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    >> the unique bond between two sisters is a story that sparked worldwide controversy because one was born to save the other. we'll talk to the sisters in a moment. first, here's nbc's george lewis .

    >> reporter: abe and mary say they feel blessed that their two daughters are alive today.

    >> you think it was a miracle?

    >> we think it was a miracle, yes.

    >> reporter: in 1988 at age 16, anissa was diagnosed with leukemia. doctors saying her only hope was a bone marrow transplant . the family began a frantic search for a matching donor.

    >> we called our friends, family, strangers that we didn't know. we'd hold community meetings and try to look for a donor for her.

    >> reporter: but they came up empty-handed. it was then that mary hit on the controversial idea of having another baby to donate marrow. the odds were against the family.

    >> everything had to align perfectly. mary had to get pregnant in her 40s from her husband who had a vasectomy reversed. to have a match and then get through really an arduous transplant.

    >> she's kicking me.

    >> reporter: mary did get pregnant but there was only a one in four chance the baby would be a matching donor.

    >> we had faith. we had hope that everything would turn out. and it did.

    >> reporter: the new baby named marissa was a match. anissa got the transplant and it cured her leukemia.

    >> what does your sister mean to you?

    >> oh, she means everything.

    >> without her, and her sickness i would not be here. without me being a perfect match for my sister she would not be here as well.

    >> reporter: over the last 35 years, doctors here at the city of hope have performed more than 10,000 bone marrow transplants but none have received as much attention as anissa's case. her doctor says because of the publicity, 100,000 people signed up to be marrow donors.

    >> the legacy has carried on for 20 years.

    >> reporter: the city of home has an annual survivors' reunion of bone marrow recipients. anissa somewhere in the huge crowd surrounded by her legacy. for "today," george lewis , california.

    >> anissa and marissa join us along with dr. nancy snyderman . good morning.

    >> good morning.

    >> nancy and i were saying how well we remember the story 20 years ago. are you totally cancer-free?

    >> i am totally cancer-free. it's been amazing.

    >> it has been. your parents took a real risk back then having a child to try to save your life. you were 16 at the time. i had never heard of anybody doing this. were you part of the decision-making?

    >> i was definitely part of the decision-making. i wanted to know everything that was going on. because of the fact that i wanted to know if i had a few years to live, a few months to live. so the relationship with my parents and doctors allowed me.

    >> when your parents said, we are going to try to conceive a child to save your life. how did you process that?

    >> i was thrilled. i wanted my parents to have something they could focus on, that they could carry on with and i thought another child would create that for them. they were so focused on me, my life, what was going to happen. it was just time to take the focus off of me. when i found out it was a little girl i was thrilled.

    >> you were thrilled. the medical community at the time was not thrilled at all. it was a big deal .

    >> it crossed so many medical ethical lines because when we think about people having babies it's sexual passion and a desire to pro create. this was the passion to save a life. the whole idea of having a baby who could not give informed consent to go ahead and donate bone marrow to someone where it might not work. if ever there were a case where the planets aligned and everything that could have gone wrong didn't, everything that did go right did, it did turn medical ethics upside down. i was very critical of this as a doctor early on. then i thought, as a mother would i do it? i thought, yes, i would.

    >> marissa , everybody talked about you as the fetus, the vehicle to save your sister's life. look at you. have you ever gone back and questioned why you were brought into this world?

    >> no. not at all. people are entitled to their own opinions and medical ethicists or however. but i'm so glad i'm in this family. i have two loving parents, two brothers and sisters . i couldn't have asked for a better family. i have never questioned it.

    >> reporter: there are people who argue about this. does that hurt you?

    >> it doesn't, to be honest. it really doesn't. i believe that the people who are critical, the people who are judgmental don't know my family. so they are completely entitled to their own opinion but they don't know my family. they probably don't put themselves in our shoes and ask themselves, would i do this for my own child.

    >> i think we are getting people to understand how important it is to sign up to be bone marrow donors. now you can bank cord blood so it's a whole new world. to see this and the friendship and everything has been extraordinary.

    >> my favorite thing about you assisters is you still fight.

TODAY contributor
updated 6/3/2011 10:16:41 AM ET 2011-06-03T14:16:41

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.

Mary and Abe Ayala were in their 40s when they decided to try to have a child to be bone marrow donor for their daughter Anissa, then 16.

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 Ayala with her sister, Marissa, whose bone marrow was successfully transplanted into her in 1990. Today Anissa is cancer-free.

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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Discuss: Do you agree with the decision the parents made 20 years ago?

To save their leukemia-stricken daughter, they decided to have a child to provide bone marrow

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