She Came for Healing, She Left Inspired
By Sharon Ricks
On the Front Page...
Susana always knew she was different. She had blue lips and fingernails. She couldn't run. She couldn't play hard. And for her, ordinary childhood diseases meant a trip to the hospital. She had a hole in her heart, and the bigger she got and the more she did, the less oxygen she had.
Susana Capristo was born with Tetralogy of Fallot, a congenital heart abnormality associated with four heart defects. As a result, most of the blue blood, which is ordinarily routed to the lungs to receive oxygen, bypassed her lungs and was diverted to her arteries. This caused low levels of oxygen in her blood.
"I fainted when I was 6 months old," explains Capristo, who is from Lanus, a small town on the outskirts of Buenos Aires. "So they started checking me out at that point. I had normal development, but as I grew, I tried to limit my activity because I couldn't get enough oxygen."
Nowadays, children born with this disorder commonly undergo one operation to correct the defects, but in 1955, that surgery was just being developed and was not available to her. So the standard operation was to connect the subclavian artery to the pulmonary artery, forcing arterial blood into her lungs. This was done using the Blalock-Taussig shunt.
It was a temporary solution. Capristo still needed corrective surgery to close the connection between the right and left side of the heart and to enlarge the connection between the right ventricle and the pulmonary artery so blood could more easily get into her lungs.
The family had heard about NIH through an Argentine doctor who had been here before, Capristo explains. "I knew I'd have to come eventually. But I wasn't exactly looking forward to it. When people asked me how I felt, I'd never tell them when I was hurting, because I didn't want to worry my parents and was trying to avoid having to go."
For the next 9 years, Capristo tried to limit her activities. But as she grew, her episodes of lack of oxygen increased. "As I got older, I couldn't walk from here to the door without losing breath," she says, pointing to a spot some 20 feet away.
In December 1966, Capristo and her parents traveled 5,183 miles to the NIH Clinical Center. Dr. Andrew G. Morrow, then NHLBI's chief of heart surgery, operated on Capristo on Jan. 10. He was among the first to do this type of surgery. Capristo says the immediate post-operative phase was very painful, with tubes everywhere, but within 24 hours she was walking around her hospital room. Four days later, she was rolling her wheelchair around the Clinical Center's 14th floor. Two weeks later she did all the big Washington, D.C., monuments on foot.
"I walked through Arlington Cemetery, and I walked all 65 steps of the Lincoln Memorial!" she says. "It seemed like a miracle."
Susana left the Clinical Center inspired. She had always wanted to be a doctor. She was always around doctors. But being at the CC had inspired her even further. She was only 11, but for her, cardiology was more than a passing dream. It was a part of who she was.
Capristo achieved her dream. Today, she's a cardiologist in the suburbs of Buenos Aires. On July 27, she interrupted a vacation in Florida to come back to NIH. She was still holding the plastic identification bracelet she'd worn 32 years before. This time, she was met by Dr. Julio Panza, head of NHLBI's echocardiography section.
Capristo remembered lots of things. She remembered: the blue tile on the walls in the area where she spent most of her time; the sausage, milk and greens with no salt her first meal after the surgery; the gift shops, where her parents bought her things; the cafeteria, where she couldn't eat; and the games and crafts. "Being a patient here was always a pleasure, despite the fact that I wasn't feeling well," she says.
But there were hard memories too, like the one about Kathy. The two were the same age and had the same disorder. Kathy spoke English and Susana Spanish, but somehow they understood each other and played together. Susana and Kathy were operated on on the same day. For a year after their operations, Susana wrote letters to Kathy, but never got an answer.
"I was lucky," Susana says, removing the tears. "When I came here, I didn't know if I was going to survive the operation, and I did, and I was just very lucky. And my parents ran into Kathy's father the next day, and they saw that he was just destroyed, because she had died. They didn't tell me for a year."
When asked what she would say to inspire someone with her condition, Susana is emotional. "I've been very lucky in my life," she says. "They have to carry on. They have to go forward, no matter what. Even if you think there's no hope and no possibility, you have to keep going forward."
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