11:46 AM MST on Sunday, July 18, 2004

By Carla McClain / © The Arizona Daily Star

The day her baby brother was born, Haley Knutsen's chances for survival shot up dramatically.

The baby, Jayce, has donated perfectly matching stem cells from his umbilical cord to Haley, 8, to give her a new blood system free of the leukemia that has stalked her since she was 2.

His gift - given two weeks ago during a transplant at University Medical Center - more than doubles the chance Haley's life will be saved.

The lack of a related donor is one reason why Tucson's most famous leukemia patient, Carlos Valencia, has suffered repeated transplant failures.

Well aware of this, parents Chris and Angie Knutsen frankly admit they conceived Jayce to try to save Haley.

"We always planned on having another child as a kind of backup just in case Haley got sick again," said Chris Knutsen.

But in doing so, they stepped into the middle of an international controversy over the rights and role of "donor babies," and how they are conceived.

"These are children who are loved and cherished," said Jeffrey Kahn, director of the Center for Bioethics at the University of Minnesota.

"But as time goes on, how much risk will be placed on the donor child for the benefit of this sick child? If the transplant fails, will the donor child have to give bone marrow? If the sick child's kidneys are damaged by chemotherapy, will he have to give a kidney?

"It's hard to say parents shouldn't have this baby because of these issues. If this is the only way to save my child, I would do anything I could. They just need to be aware of what could become an untenable conflict for them - weighing the welfare of one child versus the other's."

The Knutsens, who live just outside Phoenix, said they at first delayed having another baby, as they waged the tough battle for Haley's life.

"But when she relapsed, we got scared," said Angie Knutsen, who grew up in Tucson and has been sleeping and living in Haley's room round-the-clock at UMC since her daughter's June 29 transplant.

"We thought, should we have another baby, and we went back and forth. But we did want a match for Haley, and then I did get pregnant - earlier than I planned.

"I asked my husband, do you think about what we did - it puts a lot of weight on having this child. But we have been so blessed. No matter how this comes out, Jayce is a blessing on all fronts for us."

The Knutsens also knew the odds were actually against Jayce turning out to be a match for Haley. They gambled on a 1-in-4 chance that would happen, and were more than willing to accept either outcome.

"We were very lucky," said Angie Knutsen.

That roll of the dice was indeed lucky, the numbers show. A matched, related donor puts the survival rate for a cord- blood transplant at 63 percent. With an unrelated donor, that drops to less than 30 percent, according to a study published in the New England Journal of Medicine.

Although Haley is younger than Carlos Valencia, now 16, Haley's battle against leukemia has followed a similar, frightening path - until now. She too, suffered the failure of her first cord-blood transplant three years ago, after using an unrelated donor.

But while Valencia has gone on to try three more transplants, all with unrelated donors and all unsuccessful, the birth of Jayce changed the odds for Haley.

"There is no question that with a related donor, the transplant is a much smoother thing with a lower fatality rate," said Dr. Michael Graham, director of pediatric bone-marrow transplantation at UMC, who has cared for both youngsters.

Haley will require less of the powerful anti-rejection drugs she had to take the first time around, drugs that made Valencia and her quite sick.

"She started having seizures from that medicine," said Chris Knutsen. "Then she needed anti-seizure medicine to deal with the seizures."

In his career, Graham has handled about a half-dozen cases similar to the Knutsens' - where the donor was a baby born for that reason.

And it used to make him uncomfortable, he admitted.

"The underlying principle of medical ethics is that no person can exist solely for somebody else's benefit. So I worried about creating a child specifically to create a donor," he said.

He was especially concerned about a North Carolina mother with a diseased child who took fertility drugs to try to have a "donor baby," even though she was divorced. She had twins, but neither turned out to be a match.

"So here are two more children in a split and strained family," he said.

"But with the Knutsens, the situation is very different. This is a very together family, who already had the idea they wanted another child.

"I think as long as the family understands this is a child they are bringing into the world, and not just a donor, it's acceptable. I am more than happy to work with any family who is trying to save a sick child. I understand the obligation they feel."

In some cases, however, parents have talked about having a baby as a donor for another child, then giving the donor baby up for adoption, said George J. Annas, chairman of the department of health law, bioethics and human rights at Boston University School of Public Health.

"That's too much," Annas said. "I don't think it's actually happened yet, but that is why there is discussion now about establishing a protocol to appoint a patient advocate, independent of the family, to protect the welfare of the donor child."

The controversy escalates when techniques are used to ensure the donor baby will be a match. That involves test-tube fertilization, then testing of the several resulting embryos to determine which is the perfect match. The matching embryo is then implanted and born, producing what some call a "designer baby." The other embryos are usually discarded.

That's when the Catholic Church steps in to protest, even if this is done to save the life of a child.

"No matter how good the purpose, in vitro fertilization is of grave moral concern, because it means embryos are destroyed. Each one is a sacred life," said Fred Allison, spokesman for the Roman Catholic Diocese of Tucson.

But the natural conception of a child to save another - as in the Knutsens' case - poses no such problem, he said.

"This is something done out of love," said Sister Kathleen Mary McCarthy, senior vice president of mission and sponsorship at Carondelet Health Network.

"The parents do this for the love of the children. That is not outside the guidelines of the church."

In fact, some ethicists have argued it might be morally wrong not to have a donor or designer baby, if possible, when another child's life is at stake.

"In a situation that requires an intervention involving no sacrifice and no inconvenience by one child in order to save the life of another child, (this) is morally acceptable. It may even be morally required," Dr. Merle Spriggs, head of the Ethics Unit at Royal Children's Hospital in Victoria, Australia, wrote in a British medical journal.

"That's how I feel," said Angie Knutsen.

● Contact Carla McClain at 806-7754 or at cmcclain@azstarnet.com.

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