Advertisement

Woman Is Having Baby to Save Her Ailing Daughter

Share
TIMES STAFF WRITER

In an unusual case that raises complex ethical issues, a 43-year-old Walnut woman is having a baby in hopes that the newborn can become a bone marrow donor for her teen-age daughter, who is suffering from leukemia.

“I never thought I’d be pregnant at my age, but when you’re faced with the possibility that your child is going to die, you desperately seek, and whatever you need to do, you do it,” said Mary Ayala, who is due in mid-April.

Although family members are the best sources for transplants, none of the Ayalas proved compatible when tested. A search by the National Marrow Donor Program of unrelated donors--with only a 1in-20,000 chance of a match--also came up empty.

Advertisement

Doctors said the bone marrow can be obtained at little risk from an infant who is at least 6 months old. And doctors say the Ayalas’ 17-year-old daughter, Anissa, is likely to still be alive then. The chances that the two siblings’ tissues will be compatible are about one in four.

Medical ethicists interviewed Thursday said it is extremely rare for a baby to be conceived specifically to serve as a bone marrow donor for an ailing family member, and that the Ayala case raises a number of ethical issues.

Unlike adults, children are unable to give informed consent for medical procedures such as marrow donation. Such legal consent is usually given on their behalf by a parent or guardian. But, ethicists said, the Ayala case raises the issue of the parents’ ability to do what is in the baby’s best interest because a decision may be clouded by desperation over another family member’s sickness.

“What they’re doing ethically is very troubling,” said Alexander M. Capron, professor of law and medicine at USC. But he added, “On the other hand, I can sympathize with their desire to do everything possible to save their daughter’s life.”

Jake Priester, a research fellow at the Center for Biomedical Ethics at the University of Minnesota, said that he, too, can understand why the Ayalas opted to have another baby. However, “it seems to raise questions as to whether this child is simply being used as a means to provide something for someone else. How much potential pain and risk can one parent demand of one sibling for the benefit of another sibling?”

The Ayalas acknowledge that their decision is highly unusual. But they defend their choice and express dismay that anyone would question their motives.

Advertisement

“If it’s not a match, we will love our baby just the same,” Mary Ayala said softly. The new baby, she said, “would give Anissa lots of enthusiasm, it would make her fight to stay alive to see her grow up.”

And the Ayalas say that their unborn baby girl, if able to communicate, would agree to be a marrow donor.

“It was our choice, and I think the baby, if she turns out to be the donor Anissa needs, would have thought it was a real miracle,” Mary Ayala said.

The Ayalas decided to go ahead with the pregnancy even though Anissa’s doctor, a pediatric oncologist at City of Hope Medical Center in Duarte, advised Mary not to become pregnant just for Anissa’s sake.

“I thought it was a peculiar reason to have a baby,” said Dr. Patricia Konrad. “It made me uncomfortable. It didn’t sit well, if that was the only reason, to have a child to help another child.”

But Konrad said she plans to perform the transplant if the infant girl, whose sex was revealed through the prenatal diagnostic test known as amniocentesis, proves to have compatible tissue.

Advertisement

Last year, after Mary and Abe Ayala--who own and operate a speedometer repair business--had exhausted all alternatives to save their daughter’s life, they decided to create one of their own.

At a time when many of their friends were becoming grandparents, the Ayalas opted to become parents again.

The Ayalas say their decision was not a frivolous one. The couple did a lot of soul-searching, they said, and discussed the idea at length with Anissa and their 19-year-old son, Airon. They also said they asked for--and received--God’s guidance.

“I had a dream and God told me everything was going to be OK,” Mary Ayala said. “He wants me to have this baby.”

Anissa’s doctor said the leukemia has stabilized, leaving her in relatively good health.

The teen-ager’s burnished brown hair and rosy skin belie her illness. She does volunteer work, exercises at the local gym and expects to graduate from Walnut High School in May.

Even after the Ayalas decided to have another child, they didn’t know if they could because Abe Ayala had undergone a vasectomy after Anissa was born.

Advertisement

At first, doctors offered little hope of a reversal. But six months after the vasectomy reversal operation, Mary Ayala became pregnant. The baby is due April 13, nearly two years to the day since Anissa’s illness was diagnosed.

This week, as Mary Ayala recounted the history of her daughter’s leukemia, Anissa wrapped her arms tightly around a pillow on the family’s living room couch. But when the conversation turned to the baby, mother and daughter took on the conspiratorial tones of sorority sisters.

Mother and daughter have combined their names to come up with one for the baby--Marissa Eve.

When Marissa is born, Konrad plans to collect blood from the baby’s umbilical cord, then freeze the blood for use later in the transplant.

If the baby’s tissue matches, Anissa’s doctor will begin the long and painful process of preparing her for the transplant by destroying her existing marrow through bombardments of radiation and chemotherapy.

The harvesting of the marrow, as the medical procedure is known, is done under general anesthetic, during which a thick needle is inserted into the marrow cavity of the donor’s hipbone. Konrad said a healthy donor can regenerate the extracted marrow within a week.

Advertisement

The marrow is prepared and then injected into a vein of the recipient, similar to a blood transfusion. The marrow cells then travel through the bloodstream to the bone marrow, where they grow.

Because the pregnancy has only a one-in-four chance of yielding a match, the drive to find a donor for Anissa continues, with the help of such groups as Covina-based Life-Savers Foundation of America. The foundation recruits donors for the 9,000 Americans who are awaiting bone marrow transplants.

Also, Walnut High students, their families and friends next week will begin to recruit volunteer marrow donors for Anissa and to help raise money for testing.

Meanwhile, the Ayalas are waiting out the last two months of pregnancy. “We face it every day, that maybe today Anissa gets sick,” Mary Ayala said. “But you just can’t dwell on it.”

“We’re just waiting and hoping that our miracle baby will be the miracle baby that Anissa needs.”

Times medical writer Robert Steinbrook contributed to this story.

Advertisement