Volunteering as a liaison for a Catholic ministry in her hometown of Santo Domingo in the Dominican Republic, Tanya Luciano oversees programming that includes a medical clinic primarily serving Haitian immigrants. In relatively good health, Tanya never could have imagined she would need advanced medical care and the kindness of strangers to save her own life.
In her work at the clinic set up by parishioners with Our Lady Star of the Sea Catholic Church in Ponte Vedra Beach, Tanya and Jacksonville pediatrician Laura Beverly, MD, met five-year-old Anneri, born with Tetralogy of Fallot. This life-threatening condition involves four heart abnormalities occurring together that affect the body’s ability to get blood to the lungs to get oxygenated, which causes oxygen-poor blood flow to the body. Anneri’s aunt and grandmother said the sick little girl would die without heart surgery.
This past February, Dr. Beverly reached out to pediatric cardiologist Jose Ettedgui, MD, co-founder of Patrons of the HeARTS (an organization that brings international children with congenital heart disease to Jacksonville for life-saving heart repair). “Dr. Ettedgui graciously accepted Anneri as a patient and so Tanya began the monumental task of obtaining the proper documents for her to travel to Jacksonville for surgery,” said Dr. Beverly. “This was especially challenging because Anneri’s mother was dead, her father was minimally involved in her life, her grandmother was unable to travel, there were no birth certificates, and all involved had limited education and no travel experience.”
She added, “Over the course of the next several months, Tanya was able to obtain the necessary passports, visas and other travel documents. Tanya learned much about congenital heart disease in the process.”
Just as Anneri’s paperwork was being finalized, Tanya had a check-up by an internist in Santo Domingo. At Tanya’s request, the doctor ordered an echocardiogram. “In the first echo, the cardiologist [who performed the test] said I had an atrial septal defect and that to correct it, I would need open heart surgery,” remembered Tanya, a usually active 41-year-old woman who had been having symptoms like shortness of breath, nausea and fatigue with exercise that she had attributed to the hot weather and her asthma. “That news really impacted me. I would never have expected that I could have something abnormal in my heart.”
An atrial septal defect is a large hole in the upper chambers of the heart that in the U.S. would have likely been picked up in childhood during elementary school. Tanya’s previously undiagnosed condition meant she would need medical intervention to avoid pulmonary hypertension and abnormal heart rhythms that would’ve led to heart failure and a shortened life expectancy.
While Patrons of the HeARTS helps children with congenital heart disease, Dr. Ettedgui explained to Tanya and Dr. Beverly that the UF Health Pediatric Cardiovascular Center affiliated with Wolfson Children’s Hospital has a unique Adult Congenital Heart Program. “What many people don’t know is that pediatric cardiovascular physicians are experts in evaluating and treating congenital heart defects, even in adults with or without lifestyle-related heart disease,” said Dr. Ettedgui’s colleague, Brandon Kuebler, MD, a pediatric cardiologist who is an adult congenital heart specialist with Wolfson Children’s and the University of Florida College of Medicine ̶ Jacksonville. “Our Adult Congenital Heart Program allows us to provide life-enhancing and life-saving heart care at Wolfson Children’s Hospital and at our outpatient clinics throughout the region.”
Tanya had an eight-hour heart surgery August 26 in Wolfson Children’s Hospital’s Pediatric Cardiovascular Surgical Suite, performed by pediatric cardiothoracic surgeons Michael Shillingford, MD, and Eric Ceithaml, MD. Tanya is recovering well, visiting her brother in New York, and will return to Santo Domingo soon. She is walking 2.5 miles every day without experiencing shortness of breath. “I feel like I want to start running again and get to know how much longer distance in less time I will now be able to do,” she said.
Like Tanya, Anneri, too, has a new lease on life. She came to Jacksonville this past May and had heart surgery with the same team of pediatric cardiothoracic surgeons, nurses and other caregivers. She recovered in the Cardiovascular ICU at Wolfson Children’s.
Dr. Beverly said, “Tanya’s surgery was successful and will enable her to live a long and heart-healthy life. Likewise, Anneri, who would not have survived her teen years without surgery, is now back home in the Dominican Republic, running and playing, and going to kindergarten. What brought Anneri, Tanya and me together has been cemented into what I am sure will be lifelong friendships, thanks to Patrons of the HeARTS and the Adult Congenital Heart Program at Wolfson Children’s Hospital.”
Dr. Ettedgui said, “This was serendipity, being in the right place at the right time, connecting to the right people. We are honored to have taken care of Anneri and 14 other children from all over the world this year through Patrons of the HeARTS. And to also repair Tanya’s heart condition so she can go on to a longer life, and continue to minister to the sick and elderly in Santo Domingo. This was divine intervention.”
Tanya said she is profoundly grateful to everyone who made it possible for her to have this surgery and a better quality of life. “My nurses at Wolfson Children’s Hospital were very, very sweet and gentle,” she expressed. “Dr. Ettedgui and Dr. Beverly are the kind of people who make you have a smile on your face when you think of them. Dr. Shillingford, Dr. Ceithaml and the surgical team were phenomenal. I thank them for their very talented and professional skilled hands that successfully repaired my heart.”