California boy with rare blood finds match in time for surgery

SAN JOSE, Calif. - When 4-year-old Aaron woke up around midnight crying from a stomachache, his worried parents took him to Children's Hospital and Research Center in Oakland, Calif.

The news wasn't good, Aaron's pediatrician told them. The boy's spleen was enlarged and would have to come out. And then, just before the operation, the pediatrician detected something strange about the little boy's blood. Lab work revealed that Aaron had one of the rarest blood types in the United States.

That discovery in December set off a nationwide hunt for a blood donor for the Hayward, Calif., boy. His tale offers a glimpse into the little known world of rare blood types - a phenomenon that can mean life or death.

The search for donors is the modern version of the hunt for the proverbial needle in a haystack. In Aaron's case, that quest led to the only two people registered in blood banks in the United States who could give the boy the blood he needed.

Hematology specialists at Children's Hospital, one of the San Francisco Bay Area's top pediatric medical centers, hadn't faced such a predicament.

"I'd never seen anything like this before," said Aaron's pediatrician, Keith Quirolo. "And I don't think I will see it again."

Aaron's situation carried life-threatening consequences: Without a donor, there would be no blood available for a transfusion. Without blood on hand, Aaron could not have his spleen removed and that could lead to heart failure.

Quirolo specializes in sickle cell, a disease of the red blood cells that causes body aches and chronic tiredness, damage to organs and in some cases, stroke. Aaron, who has sickle cell, has been his patient since birth.

When Quirolo realized just before Aaron's spleen operation was scheduled that something unusual was going on with the child's blood, he sent a sample to the American Red Cross' blood center in Oakland.

Technologist John Ochsenfeld was charged with the task of figuring out what was going on.

"It's kind of like a mystery investigation," Ochsenfeld said of rare blood types.

When Ochsenfeld examined Aaron's blood, he understood right away that the likelihood of finding a match was slim. A call for help went out to the American Rare Donor Program in Philadelphia.

The program - a collaborative effort between the Red Cross and the American Association of Blood Banks - is the largest registry of rare blood donors in the country, with more than 36,000 people who might be called in a time of need. The organization also keeps a frozen supply of rare blood on hand for immediate shipment around the world and responds to more than 1,000 requests a year.

Even so, the registry's initial reaction to Aaron's dilemma was sobering. Officials would search their national database but in the worst case scenario, the child's only hope might lie in South Africa where his blood type had been found in the past. Bringing in blood from a country where HIV and AIDS rates are high, though, could result in another set of problems.

Everyone's blood type belongs to the major blood groups: A, B, AB or O. It is the additional proteins - known as antigens - on red blood cells that can lead to a person's blood type being declared rare.

There are about 600 known antigens on human red blood cells and people can have any mathematic combination. Those with rare blood types have a combination of either uncommon antigens or lack the most common ones. About 1 in 1,000 people are believed to have a rare blood type. Very rare blood types, like Aaron's, occur in about 1 in 10,000 people.

Aaron's case presented an exceptional challenge. He is one of only a few people known in the U.S. whose blood lacks a very common antigen. On top of that, his body has produced antibodies in the past year that have made his blood type nearly impossible to match.

As the donor registry scoured its database, the child's relatives lined up to be tested. Neither parent was a match, but a gaggle of Aaron's aunts, uncles and cousins poured in from around the state and rolled up their sleeves to see if they were.

And at the family's Oakland church, the congregation offered prayers for the little boy with the round face who loved to dance to the tambourine and drums each Sunday.

"And then we just waited," the boy's father, Aaron Seals Sr., 26, said.

At first, the news was encouraging: Five relatives might be compatible. But one by one, further tests eliminated each until Aunt Loretta remained the final hope. And then she too was eliminated.

On the national front, though, possibilities were emerging. The rare blood registry had identified five possible donors.

There were more painstaking tests. Once again, the list of potential donors shrank as donors were eliminated as a true match.

In late March Quirolo placed a call to Aaron's family.

"Latasha," he told the boy's mother, "They found a donor."

Of the tens of thousands of people on rare blood registry, only two were perfect matches for Aaron. On April 11, Aaron underwent a six hour operation. He received one unit of donated blood.

"We always realized there was a possibility that there wouldn't be a good outcome," said Latasha Davis, 25, Aaron's mother. "But we always focused on the positive."

Blood donor programs are anonymous, and so Aaron's parents will probably never know the names of those who came to their son's rescue. They only know that the donors live somewhere in the Midwest.

Despite that, Davis wanted to write thank you notes and asked Quirolo if he would pass them along to the Red Cross. But as she sat down to write, she couldn't find the words.

"How do you write something like that?" she said. "You can't express these feelings."

Aaron is back in kindergarten, excited about entering the first grade next year.

A week after leaving the hospital, he traveled to Reno with his grandmother where he played in the snow for the first time.

"This kid is lucky," said Quirolo, who knows of a Richmond man with a rare blood type and has never been able to find a donor match. "I can't believe they found those two people. He really beat the odds."

There will be future challenges: Without his spleen, Aaron is at risk for infections and blood clots. He still has to deal with the consequences of sickle cell. There is always a chance he will need another transfusion someday.

That's why back in Oakland at the Red Cross blood center, in a vacuum-tight freezer kept lower than minus-65 degrees, two more units of blood wait for him. Just in case.

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(c) 2005, San Jose Mercury News (San Jose, Calif.). Distributed by Knight Ridder/Tribune News Service.