If you look at her today, she doesn’t cut a heroic figure. A 46-year-old mother of three children, Mary Ayala is quick to laugh and pleasant. The eldest daughter, Anissa, is a 21-year-old bank clerk who will celebrate her first wedding anniversary in June and could pass for any young Southern Californian who grew up at the mall. The two are very much at ease with each other; they touch and laugh a lot.
Yet nearly four years ago Mary Ayala did something extraordinary when all the odds were against her. It propelled this mother and daughter into the center of one of the most controversial medical debates in recent times.
To save the life of her daughter, Mary Ayala made the decision to conceive a baby at age 43 to find a perfect bone marrow donor to save the life of then 17-year-old Anissa, who was afflicted with chronic myelogenous leukemia, a strain that is particularly susceptible to treatment with a successful bone-marrow transplant.
After a long and exhaustive attempt to find a living donor, Mary and Abe Ayala were prepared to take the 1-in-4 chance that a sibling would be a donor match; it was the only option. The decision touched off a public debate over whether the Ayalas did the right thing. To some people it raised the disturbing image of children being born to serve the survival of others-being born as some sort of organ-supply vehicle.
The daughter born three years ago, Marissa, is healthy and loved. Anissa went on to conquer leukemia, thanks to the transfusion of healthy marrow cells from her little sister. She now has passed the critical two-year period since the transfusion, and doctors say she has a 95 percent chance there will be no return of the disease.
At a time in her life when she expected to have her two adult children off her hands, Mary Ayala is now raising a 3-year-old girl. But looking back on that life-saving operation performed at the City of Hope National Medical Center in Duarte, Calif., Mary has no qualms about what she did to save the life of Anissa-a story that will be told in the NBC television movie “For The Love of My Child: The Anissa Ayala Story” on May 10.
“Anissa was first diagnosed with leukemia in April 1988, and she was only given three to five years to live. It was a case of `What do we do now?’ ” Mary Ayala says. “We were told there was only a 1-in-20,000 chance of finding a suitable donor and there were only 17,000 on the national register, so we felt we didn’t have a chance, especially as we are Hispanic and only 5 percent of those on the register were Hispanic.
“First we set about trying to get people to be donors, but when we realized our chances were not very good, we decided to look for another solution. I had to do something,” she says.
“We really didn’t think of it in terms of any moral conflict. When all the controversy did come up, we were very surprised and shocked that anyone would even care about what we were doing. Why should they care? What business is it of theirs? We are the ones who had the baby.”
A survey of bone-marrow-transplant centers in 1991 found 40 cases in which couples told doctors that they were conceiving babies to serve as donors. The difference is that these couples shunned publicity.
Mary Ayala recently said she thinks a lot of the public debate occurred because most people didn’t know the reality of their family life. Strongly religious, she maintains there was never a possibility that the fetus might be aborted if tests showed the baby hadn’t been a bone marrow match for Anissa, as some couples in the survey indicated they would do.
Nor was it a question of the baby being any less loved than the older children. (The Ayalas have a 23-year-old son, Airon.)
“People didn’t know us, they didn’t know what kind of family we were. Maybe some people thought that if our baby wasn’t a match, we were going to have an abortion. Maybe they thought the baby was going to suffer. They didn’t know that two hours after the marrow transplant, the baby was going to be running up and down the hallway.
“Looking back, I can’t really blame anyone for the way they felt, but people cannot judge us by what we did because we feel we didn’t do anything wrong.”
What the Ayalas did overlaps into such issues as fetal testing, something Mary admits is difficult to comment on.
“I have a very hard time dealing with that. My husband and I are very much against abortion. It’s like fetal testing. I really can’t say that it’s wrong, there are so many diseases out there, not just leukemia. I just don’t know, it is such a hard issue. I personally do think it’s too difficult to make cut-and-dried decisions on these (issues). People were judging us and saying what we did was wrong,” she said.
What surprised her was the inner strength she found, even in the face of odds that the leukemia could be defeated and that her husband, who had a vasectomy, might resist having the operation reversed in an attempt to conceive another child.
“I was surprised at my own strength. You either break down or you fight through it. Sometimes you have to be a master of things. There are times when you can’t really let your true feelings show, you can’t show how scared you are. You have to overcome this feeling of being let down: `Why is this happening to me?”‘
“My husband is very strong, but he’s the quiet type,” she says. “I think if I didn’t have him I wouldn’t have fought so hard because I could always fall back on him, but I do think that women, especially mothers, have to be the strength. Men can say `I don’t want to deal with it,’ and other men can just walk away. It took me about three months to convince my husband to go ahead and have his vasectomy reversed. I think he thought I was going crazy,” she says and laughs.
“I think he felt, `She’s not thinking straight, she’s desperate, she wants to try anything.’ I think if I hadn’t pushed him so hard he wouldn’t have had it done.”
With the marrow transfusion a success, Anissa now says the family was able to pull through because they turned their anger into courage.
“I was never personally afraid to die, if I was I don’t think I could have been so strong about it, but I was angry for a long time about my situation,” she says. “I managed to turn that into a strength for myself. I think if I didn’t have all that anger, I couldn’t have fought as hard as I did.
“The family didn’t sit there and cry all day about it, we simply went out and tried everything. We were never home to sit there and cry about it. Sometimes we were all out at meetings trying to get people to get recruited for the donor program.”
What she is left with, however, is a sense of guilt at why she survived, Anissa says. “I just had a real close girlfriend who was at my wedding, and she went through a bone-marrow transplant. Her disease came back and she recently passed away.”
Having battled so long for her own daughter, Mary Ayala often is contacted by mothers in similar situations seeking advice or just moral support. “I have this one mother in Walnut, Calif., where we live. Her 17-year-old son has been diagnosed with leukemia. He’s now in remission, and the mother is having such a hard time talking him into a bone-marrow transplant because he’s fine now, but if the disease comes back again he will die. Maybe if he sees someone who has already gone through it and is alive and well, he’ll get inspiration.”
Bone-marrow transplants are not considered major surgery. A one-inch-long needle is injected into a donor’s hip, and a cup of the viscous red bone marrow is withdrawn and then inserted through a catheter into the chest of the recipient.
“We tell them about this,” says Mary. “Mothers are the ones who tend to call me because their child has gotten sick. The most important thing I tell them is to love that child. When your child is sick, you have a tendency to either get very close to them or you back away because you feel guilty.
“When your child is sick, you have to love them so much, you have to make them feel they did nothing wrong, you have to make them feel very special.”
The biggest thing in her life now that Anissa is safe is Marissa. “I feel better about it because I find a lot more women out there who have children later in life and I don’t feel as bad,” she says. “Having Marissa, I find I have a lot more energy, but I also get a lot more tired too. The thing is we enjoy her so much. I look at her and she looks exactly like my son and me, dark hair and eyes. Anissa is fairer and looks like her dad.
“It’s funny, Marissa and Anissa look quite different, but they have the same blood type. When I was going around the malls looking for donors, I remember looking for people who looked like my daughter. For 24 hours a day that was what I was thinking.”
The unsuccessful search for a donor in the first year of Anissa’s illness was a turning point for Mary Ayala; it made her aware how tough it is when only a small number of people nationwide are on the register as possible bone-marrow donors. Getting people to be tested and put on the register became a mini-crusade for the family.
“I don’t think anyone should have to go through the extreme we went through. If Anissa had had a donor, then we would have never even thought about having another child. This could be improved so much if people would be tested to be donors. It’s a simple blood test and then they have their name put into the national register here in the United States.
“We were very lucky that Anissa was given so much time. I had the time to get pregnant. I had the time when the baby could grow to 14 months, when they could take out some marrow. Some people don’t get that time. I think it would be great if everyone was registered as a donor.”
A baby can be tested as a possible donor but can’t contribute marrow other than for a sibling until age 18.
Besides finding donors, the other hurdle is the cost. Abe Ayala, 49, who is office manager at a company that makes speedometers, has insurance that paid for Anissa’s treatment, but Mary Ayala says that she knows others who are not so lucky.
“We deal with a lot of people who have a donor, a brother or a sister, but they cannot do it because they can’t pay for the operations. They have no insurance or the insurance company will not pay for it because they think the bone marrow transplant is experimental.”
Despite the intense media coverage, Mary Ayala says the experience hasn’t been bad.
“I don’t go out thinking people will recognize me and it surprises me even now when it happens. When it happens it’s been good because it has always been a nice reception, it has always been a person who has been on our side. I really don’t know what I would feel like or what my reaction would be if they weren’t.
“I’ve never had to defend myself or what I did. I’ve had bad letters, sometimes my husband wouldn’t even let me see the letters, much less let Anissa see them.”
The biggest worry is all the exposure Marissa has received. “Her little face has been in the media a lot; people recognize her. That scares me a bit. I think Anissa is strong enough to handle it, but I don’t want it to happen to my baby. I hope that when she gets old enough to understand all this, by that time people won’t notice her as much.”
