A reporter/writer recently contacted me and shared the stories she’s found about savior siblings.
Here is the third one – Anissa & Marissa Ayala

More Babies Being Born to Be Donors of Tissue
By GINA KOLATA
Published: June 4, 1991
At about 8 o’clock this morning, doctors at the City of Hope Medical Center in Duarte, Calif., plan to transplant bone marrow into Anissa Ayala, a 19-year-old girl who is dying of leukemia.
The marrow will come from her baby sister, Marissa. Their parents say they conceived Marissa to provide bone marrow to save Anissa’s life.
Doctors and ethicists say this is the first time a family has publicly admitted conceiving a child to serve as an organ donor. But many others have done so privately. Parents have had babies to provide bone marrow for siblings and relatives or even, in one case, a kidney. Some parents have sought prenatal diagnosis to insure that the fetus had genetically compatible tissues necessary to serve as a donor, intending to abort it if not. Debate Over Ethics
In a recent survey of bone marrow transplant centers, 40 cases were found in which families had confided to doctors that they were conceiving babies to serve as donors. But these parents have shunned publicity, leery of letting the world pry into their ordeals.
In the case of the Ayalas, their decision to conceive a child as an organ donor was declared in public for all interested parties to examine.
Ethicists and doctors are asking whether conceiving a child as a source of donated organs violates the principle that individuals should be brought into the world and cherished for their own sake and no other motive. Others argue that the children who are conceived to donate organs are deeply loved and that it is unfair to point fingers at parents who have a child to save another person’s life. From the point of view of the child, they say, it is certainly better to have been conceived to donate rather than to have never been conceived at all.
It may even be justifiable to abort a fetus of the wrong tissue type, some experts say, but others say they cannot condone this.
At first, said Dr. Steven Forman, the City of Hope transplant specialist who is caring for Anissa, transplant experts were saying, “What’s the big deal? This happens all the time.” He said that the risk to a bone marrow donor was negligible and that even for a kidney donor the major risk was going through life with only one kidney.
But as the case gained attention, Dr. Forman said, he began to ask himself why he found it acceptable to conceive a child to be a donor and why, if it was so acceptable, doctors and parents had kept quiet about it until now.
In conceiving Marissa, the Ayalas were seeking to escape from a desperate predicament. Their daughter Anissa has chronic myelogenous leukemia, a disease that kills 80 to 90 percent of patients within five years of diagnosis. Her only hope is a bone marrow transplant, Dr. Forman said, and even then her survival is far from assured. Twenty to 25 percent of marrow transplant patients die, usually of infections, adverse reactions or a return of the leukemia. Search for a Donor
When Anissa was found to have the disease four years ago, she and her family began searching for someone whose tissue type was compatible with hers and who would be willing to donate marrow. There is discomfort for the donor, who is anesthetized while doctors poke long needles into hip bones and withdraw precious tubes of the dark red marrow.
The patient, meanwhile, has undergone four days of intensive, whole body irradiation followed by high doses of chemotherapy, a process that destroys every cell of his or her own cancerous marrow. As soon as the donor’s marrow is drawn, it is dripped into the patient’s bloodstream, where it finds its way into the bones and grows there.
But the Ayalas could not find a compatible donor. Neither parent had the right tissue type, nor did their son, Airon, who is 20. A nationwide search for an unrelated donor found none.
The Ayalas, who live in Walnut, Calif., announced last February their decision to conceive a baby as the best hope of finding compatible marrow for Anissa. Abe Ayala, the father, had a vasectomy reversed. The mother, Mary Ayala, was 42 when she conceived.
More Babies Being Born to Be Donors of Tissue
By GINA KOLATA
Published: June 4, 1991
Dr. Rudolph Brutoco of Covina, Calif., the baby’s pediatrician, said that Mrs. Ayala had amniocentesis when she was six months’ pregnant and had the fetus’s tissues typed. The reason, Dr. Brutoco said, was not to have an abortion — it was too late by then, Dr. Brutoco said — but to learn if the baby could be a donor. If the fetal tissues matched Anissa’s, doctors would save the baby’s umbilical cord blood to give along with her marrow when Anissa had her transplant. Marissa was born on April 3, 1990.
Dr. Forman said he and the other doctors on the transplant team took “an educated guess,” that the best time to attempt the transplant would be when Marissa was 14 months old, balancing Anissa’s limited time when she would be healthy enough to have a marrow transplant with their desire to allow Marissa time to grow and develop. Anissa was admitted to the hospital on May 22 and her marrow has now been destroyed: she cannot make any red or white blood cells on her own and will die without her sister’s marrow.
When the donor is a baby, the parents give permission for the transplant. When child donors are old enough to be included in the discussions, the doctors describe the donation process to them and ask them if they want to be donors, Dr. Forman said. Most readily agree, he added. Survey Uncovers Similar Cases
Decisions like the Ayalas’ are apparently not as uncommon as might be expected. Last fall Dr. Arthur Caplan and Dr. Warren Kearney of the Center for Bioethics at the University of Minnesota surveyed 15 out of the nation’s 27 bone marrow transplant centers, including the 10 largest ones, asking doctors and nurses whether they knew of similar cases and, if so, what had become of them.
“We found at least 40 children had been conceived for the purpose of bone marrow donation in the past 5 years,” Dr. Caplan said. Most were conceived to help an older brother or sister, some for the aid of parent or cousin. “In none of these cases has there been public acknowledgment,” Dr. Caplan said.
Transplant specialists said Dr. Caplan and Dr. Kearney might have uncovered just a fraction of the cases. Parents usually do not discuss their decision to have another baby with their transplant doctors, said Dr. Patrick Beatty, a bone marrow transplant specialist at the University of Utah. “Parents usually figure it out by themselves,” he said. “Most of the time the parents don’t say, ‘Dr. Beatty, should we have another baby to try to have a match?’ Instead, the women just show up pregnant and the doctors do not ask why.
In his survey, Dr. Caplan said, he learned of one couple that conceived three children in an unsuccessful attempt to have a donor. Another couple had a child with a rare metabolic disorder that could be cured by a bone marrow transplant. They had another baby to be a donor, but the baby turned out to have the same rare disease.
In another family, a woman had been divorced and remarried when a child from her first marriage needed a bone marrow transplant. So she was artificially inseminated with semen from her former husband to conceive a baby to save the child. ‘It’s Not Rare’
Dr. Norman Fost, a pediatrician and ethicist at the University of Wisconsin School of Medicine, said he has been involved with several families who had babies because they needed a donor. “It’s not rare,” he said.
In one case, the family had a child with chronic kidney failure who had had two unsuccessful transplants with cadaver kidneys. They had another child and indicated to Dr. Fost that they were doing so to have a kidney donor. When the child was 14 and agreed to donate a kidney, doctors went ahead with the transplant, which was succcessful.
“The family believed God had given them this gift,” Dr. Fost said. “They believed the younger child had been created to save the older one.”
In another case, a couple conceived a child hoping for a bone marrow donor. They sought prenatal testing with the intention of aborting the fetus if it was not a match, but their obstetrician refused. Dr. Fost said he did not know if the woman was tested elsewhere.
Dr. Mark Evans of Hutzel Hospital in Detroit said he had refused to agree to prenatal tissue tests for a woman intending to become pregnant in a similar case.
“I do not believe that the creation of a pregnancy for the sole purpose of creating an organ donor is ethically acceptable,” he said. “I personally think it is too Orwellian for society’s own good.” Dr. Evans said the woman did not become pregnant.
Dr. Caplan said he did not think it was wrong to have a baby because of the need for a marrow donor. “Basically, people have babies for all sorts of screwy reasons,” he said. “Most people have a child without thinking about why. At least in this case, they are having a child partly from this notion of altruism.”
Dr. Fost agreed. “Of all the reasons people have children, I think this is one of the better ones: to save a life,” he said. Dr. Fost said he thought it was acceptable to use prenatal diagnosis to determine if a fetus would be of the right tissue type and to abort fetuses that were not. He said that since women did not have to give any particular reason for having an abortion, there was no justification for denying them abortions if they gave that reason. Ethicist Is Troubled
But Dr. Robert Levine, an ethicist at Yale University’s School of Medicine, said he was troubled by the idea of having babies to be donors and aborting fetuses that were not the right tissue type.
“The ideals of our society are that we are to treat each person as an end and never merely as a means,” he said. “It seems to me that when a primary motive for conceiving a child is to produce tissue or an organ, we are getting very close to seeing this new being as a means to another end. This is what raises an ethical impropriety.”
Dr. Levine added that the question of aborting a fetus of the wrong tissue type raised even murkier issues. “The nature of the debate exposes to me some of the deficiencies in our capacity to have such debates,” he said. The problem is that most people have complex, contradictory feelings toward abortion that “make it hard for thoughtful people to say this is right or wrong,” Dr. Levine said.
Ethicists have gone through this debate in discussing whether a woman could have an abortion and donate fetal tissue to a patients with Parkinson’s disease or diabetes who wanted a fetal tissue transplant.
Recalling that debate, Dr. Levine said one ethicist would say, “No, that would be wrong,” and then another would reply, “The law of the land says you can have an abortion without giving a reason, so why can’t you have an abortion for a good reason?” At that point, Dr. Levine said, “Everyone walks away looking unhappy.”
Dr. Levine said that he “would like to be counted among those people who say it’s way too complex to respond very concisely.”