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http://www.omniture.com --> Oregon Road Conditions & Cams Advertisement Email Story to a Friend May 28, 2006 Felipe Caetano of Medford kisses his 4-month-old daughter, Gabriela, who is awaiting a heart transplant. Gabriela has hypertrophic cardiomyopathy, a rare disease that will cause her heart to fail. (Mail Tribune / Denise Baratta) Gabriela's Heart By Bill kettler Mail Tribune For Gabriela Caetano to have a chance to live, she'll need another child's heart. Gabriela has a tiny, fatal flaw. Her heart, no bigger than a walnut, won't pump properly and sometimes loses its rhythm. Doctors say a heart transplant is the only way to keep her alive. On the surface, there's nothing to distinguish Gabriela from any other normal infant at 4 months. She smiles at her mom and dad, waves her arms and kicks her feet, fusses when she's hungry and gazes at strangers with wide, innocent eyes. "She's got a happy little personality," said her mother, Elizabeth, cradling the baby in her arms. Surgeons had to install a pacemaker in Gabriela's chest when she was barely 3 months old to stabilize her heartbeat. They told her parents that a heart transplant would be her only chance to survive a condition known as hypertrophic cardiomyopathy, in which the heart muscle itself eventually fails. "The heart muscle gets too thick," her father, Felipe, explained. "The squeeze when the muscle pumps blood is no longer effective." Felipe and Elizabeth, both 34, were devastated when doctors diagnosed Gabriela's disease. Three years ago, they lost a son to the same condition. Baby Alex died in his mother's arms. "He was 6 months old that day," Elizabeth said. Alex's heart condition was difficult to explain. Cardiomyopathy is rare, especially among infants, and there was no history of heart disease in Elizabeth's family or Felipe's. Their first child, Nicole, had no heart problems. The notion that they might share some problem gene seemed unlikely because they were born on different continents — Elizabeth grew up in the Northwest; Felipe came from Brazil. The Caetanos had conceived Alex to give Nicole a sibling. When his disease was diagnosed, they asked doctors whether it might be the result of some unknown gene they both carried. The doctors told them cardiomyopathy comes in many variations. "Some are idiopathic. We just don't know where they come from," Elizabeth said. "Others are genetic." After Alex's sudden death, Felipe and Elizabeth wondered whether they should abandon their plan to have another child. The doctors they consulted said there was no reason to think that cardiomyopathy would surface again. Their first child, after all, was normal. "We had so many doctors reassure us," Elizabeth recalled. "They said the only thing we had to worry about was whether we were ready emotionally to have another child." After three years they decided it was time. When they realized Elizabeth was pregnant, they were elated. Joy turned to anxiety when an early ultrasound of the fetus showed an arrhythmia — an irregular heartbeat. Doctors determined it was a condition called atrial bigeminy, which is benign and usually resolves itself without intervention. Felipe and Elizabeth couldn't help but worry. Both work in the medical field he's a medical technician; she's a secretary and memories of Alex were all too fresh. "We were scared — terrified — the whole rest of the pregnancy," she said. "We had once-a-week ultrasounds, twice a week toward the end of the pregnancy." Gabriela's atrial bigeminy resolved itself normally, but she was born a month premature. Physicians couldn't detect any heart problems during her three-week stay in the neonatal intensive care unit at Rogue Valley Medical Center, and the Caetanos celebrated their new arrival. Then, during Gabriela's two-month checkup, a Portland heart specialist discovered a slight thickening of the walls of her heart. Given the family's past, he encouraged further tests. "In anybody else who didn't have our history, he said he wouldn't have mentioned it," Elizabeth recalled. "That's when the whole nightmare began again." The tests revealed that Gabriela, too, had hypertrophic cardiomyopathy and an irregular heartbeat. Doctors encouraged the Caetanos to have a pacemaker implanted in her chest to keep her heart beating regularly and told them she would need a new heart to survive. "We know the heart muscle cells are going to fail," said Dr. Gordon Cohen, a cardiac surgeon at Children's Hospital and Regional Medical Center in Seattle, who will perform the transplant. "If the cells fail, the muscle fails. If the muscle fails, the heart fails." The family's second fatal heart flaw made the doctors re-think their original conclusion that genes played no factor in the babies' heart disease, Elizabeth said. "Of course they think it is genetically related now. They think it's something they can't test for. It must be some random recessive gene we both have." Now Felipe and Elizabeth are waiting for the call that will signal a heart is available. "The average wait is one to three months," Felipe said. "It could be sooner. It could be longer." Donor hearts are scarce, Cohen said. Parents of a dying infant are often too distraught to consider donating their little one's organs to someone else, and there are relatively few deaths among children whose hearts are small enough to fit inside an infant's chest. The Caetanos know some other family will have to suffer a terrible loss for their daughter to go on living. "This is very hard for us," Felipe said. "We've been there. We know how devastating this is. At a moment like that for somebody to make a decision that will affect somebody else's life is honorable. Our hearts go out to them. "When Alex died, I asked the doctors if they were interested in harvesting organs," he recalled, "but because of the way he died they couldn't." As of last week, Gabriela was second on the transplant list, behind another child with a more serious illness. Felipe has a bag packed and carries a beeper. He'll fly with Gabriela to Seattle for the transplant. Elizabeth and Nicole will follow. "It's high drama," Elizabeth said. "You rush to the Medford airport, get picked up by the jet and taken to Boeing Field the landing site closest to the Children's Hospital, get picked up by an ambulance at Boeing and rushed to the hospital." While the Caetanos wait, there's plenty to think about. What if Gabriela's disease advances too fast? What if a donor heart doesn't materialize? "It's hard living with the sense of constant anticipation," Elizabeth said. "You could drive yourself crazy with all the what-ifs." There are financial concerns, too. Physicians have told the Caetanos the transplant will cost as much as $1 million. Their health insurance will cover the brunt of the bill, but there are thousands of dollars in copays, medicines, travel costs and other expenses that insurance won't cover. There will also be lost income. Gabriela could spend months in the hospital in Seattle before she's strong enough to be released. Doctors have assured the Caetanos that their little girl can live a normal life with a new heart. "Quality of life for heart transplant patients is for the most part pretty normal," Cohen said. He noted the 10-year survival rate in this era is about 85 percent. "As therapies change the survival rate improves." Felipe and Elizabeth are convinced everything is going to work out. "You do your very best with what you're given," Elizabeth said, "and that's what we're doing. "I'm really hopeful this will happen and she'll come through it fine and be on the road to being a normal kid," she said. "She's a sweetie and we're going to fight for her and do everything we can do to make her OK." Reach reporter Bill Kettler at 776-4492 or e-mail: [email protected] Advertisement s Mail Tribune Home | Local News | Sports | Business | Obituaries | Life | Opinion AP News | Archives | Site Map | Community | Classified Copyright © 1997-2006 Mail Tribune, Inc. All rights reserved. Privacy Policy | Terms & Conditions | Website Feedback www.bingo.com Home Security Systems Trunks, Footlocker Custom Build Computers Discount Hotel Reservations online casinos news Ashley Furniture HomeStore Send Flowers Southern Oregon Loans California Casinos GMAT Prep Windermere Van Vleet Sports Equipment Online Casino Reviews Online Bingo Entertainment Guide Online Casino Fundraisers Sudoku Online Casinos Canada Online Pharmacy