Susan Walsh  /  AP
Carlos Aguero, 9, sits in his hospital bed as he is checked by his cardiologist Dr. John Berger, second from right, as his mother Ana Retana, left, and brother Marco, 14, right, look on, at Children's Hospital in Washington.
updated 1/3/2005 11:03:30 AM ET 2005-01-03T16:03:30

Ana Retana’s worst fears were realized when her youngest son, Carlos Aguero, was diagnosed with the same heart condition that killed two of his siblings and afflicted another brother.

But Carlos and his older brother, Marco, have now had successful heart transplants and are in good condition at their home in Frederick, Md. Marco got his transplant in March and Carlos received his Nov. 29.

Heather Langlois, a social worker familiar with the family, said that within days of Carlos’ surgery he was eating french fries and growing impatient, longing to play basketball.

Older brother Marco is not as interested in sports as Carlos, though he is well enough to participate in those physical activities. “He isn’t too excited about it,” Retana said.

The boys suffer from dilated cardiomyopathy, an illness that weakens the muscles of the heart. Of Retana’s six children, two died from the condition, two had the transplant and two have been screened and are healthy.

Daniel Judge oversees the familial cardiomyopathy program at Johns Hopkins Hospital in Baltimore. Judge said that in the United States the rate of cardiomyopathy from all causes is about 36.5 per 100,000, with one-third of those cases being familial.

“Having an additional family member with the same condition is really all that’s needed to be called familial cardiomyopathy, so roughly 10 per 100,000” cases are familial, Judge said.

After the loss of two of her children, Retana decided to leave her native Costa Rica and move with her remaining children to Frederick, near Washington, where five of her brothers lived.

'Transplanted hearts don't last forever'
Retana has eight brothers but is the only girl, so her brothers were worried about her after the trauma of losing two children. They wanted her to live close to them. The children’s father has moved back to Costa Rica, and tries to visit frequently.

Within a few months of moving to the area Retana was frequenting Children’s National Medical Center in Washington with Carlos and Marco.

The doctors in Costa Rica had told Retana a transplant was the only option. But the doctors at Children’s gave Marco, 14, and Carlos, 9, medications and inserted defibrillators to prolong the use of their own hearts before transplants were necessary.

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John Berger, the boys’ transplant cardiologist at Children’s, explained that doctors try to extend the use of one’s own heart as long as possible because of the risks inherent in transplants — including the risk of infection and the possibility that the body will reject the donor heart.

Frequently, people need another heart transplant. “Transplanted hearts don’t last forever,” Berger said. In children they appear to last about 13-15 years, he said.

“When you’re talking about transplanting adults and you tell them you are going to extend their lives for 10-15 more years and you are 50 years old, that seems like a really good thing. When you are 9 years old, 15 or even 20 years doesn’t seem hardly enough.”

The brothers received organs in time to save their lives — Carlos within two weeks and Marco within three months of being placed on the transplant list. According to the United Network for Organ Sharing, which coordinates and matches donor organs with recipients, the median wait time in 2001-02 was about 63 days for a child Carlos’ age and 74 days for a child Marco’s age.

Currently there are 254 children nationwide under the age of 18 on the heart transplant list.

Once a patient has a transplant, the only option if the body rejects the heart or if there are other serious complications is to have another transplant. Recipients “are followed very closely indefinitely,” said Gregory Di Russo, director of cardiac transplantation at Children’s, who performed the surgeries on both boys.

The one-year mark is a major milestone in the transplantation process. If someone has survived for a year after the transplant without the body rejecting the foreign organ, the chance for survival has increased dramatically, although risks continue to exist. “The body does develop some tolerance to the transplanted organ, though not complete,” Berger said.

Marco is well on his way to the one-year mark and is doing well. Langlois said he is “a completely new boy,” who rides the school bus to school and attends school dances. Retana said Marco acts like any normal teenager — though she cannot help but be protective of him still.

“When he had his old heart he never stayed alone at home — never. Now he says: ’Mommy, I can stay alone at home, go ahead, go ahead. Nothing will happen to me, I will be fine.”’

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