“If you don’t fall in love with this baby, you won’t fall in love with anyone,” Dr. Jose Ettedgui says as he shows an image on his cell phone of a baby boy with the biggest, most adorable eyes. He recalls the baby’s success story as an amazing travel adventure, all made possible by Patrons of the Hearts, cofounded by Dr. Jose Ettedgui and his wife, Hilda.
The baby was born earlier this year in Dominica, one of the poorest countries in the Eastern Caribbean. He had transposition of the great arteries, a congenital heart defect that meant the child only had months to live. He was flown to Martinique for a minimally invasive procedure to stabilize him and then was flown to Barbados, the location of the nearest U.S. consulate, to obtain a medical visa. From there he jetted to his final destination, Jacksonville, for a procedure to permanently correct the problem. Six weeks later, he returned home, now able to live a normal life.
Patrons of the Hearts prepares to celebrate its 11th anniversary. The organization has helped a total of 104 children from 24 countries. Founded in 2005, Patrons of the Hearts makes possible the best medical care available for the treatment of heart disease to children born in remote or underdeveloped parts of the world. It is a partnership between the University of Florida Pediatric Cardiovascular Center at Jacksonville, Wolfson Children’s Hospital, which is part of the Baptist Health system, and the Jacksonville community. The center and hospital donate the cost of inpatient hospitalization and physician services for the children’s heart repair, and Patrons of the Hearts covers the supplies, housing and incidentals for each child, an average of $5,000 per child. The physicians and nurses and other medical staff donate their services as well.
“It has been an extraordinary 10 years,” Jose says. “From the first year, 2006, when our hope was to bring in one or two children and we actually brought six, to now, when we’re averaging 10 to 12 a year, it has been a beautiful experience.”
The Ettedguis moved to Jacksonville in 2002. The next year Jose went on a mission trip to Kenya. The medical team hoped to put their expertise to good use in treating children with heart problems.
“The outcome was not as good as we wanted,” he says. “We found that trying to deliver very complex, sophisticated care in an environment that had little to no infrastructure to support our work meant that the children didn’t fare well after surgery. We knew that the children would have done better here, so we changed the model.”
Jose remembers the first baby they brought as the most challenging case. Aya was six months old and from Morocco. She had an initial operation for chronic heart failure, from which she recovered well. As planned, Aya had a second operation two-and-a-half years later. Afterwards, she became very sick and nearly died. She slowly recovered, however and a few years after that, she had a third and final procedure. Jose reports that she is 11 now and doing very well.
The Ettedguis are quick to give credit to the whole community. “This is a Jacksonville success story. Volunteers, financial contributions, in-kind donations and moral encouragement — this community is so generous,” he says.
Aya traveled all the way from Morocco to be the first patient to receive care from Patrons of the Hearts.
Hilda Ettedgui is the creator of Artscapade, an annual event that raises the funds needed to bring the children to Jacksonville and treat them. “We focus on the children we’ve been able to help and raising awareness of how many more need our help. We call it a celebration where art, music, fun and the love for children meet,” she says.
The local arts community is a major participant in the event, donating art that is exhibited ahead of the event and then auctioned off to attendees. “We always have children’s art as part of the event as well,” Jose says. A variety of art, such as a choir or professional dancers, have also been a part of this special event.
This year’s Artscapade’s theme is “The Heart and Soul of Patrons” and highlights the lives of some of the children with whom Patrons of the Hearts has stayed in touch in the past decade. The Ettedguis have stayed in very close contact with one special baby, in particular. Rute is the 18th baby that Patrons of the Hearts brought to Jacksonville, and the first one to travel here without a parent. She was 13 months old, but weighed only 11 pounds. She had ventricular septal defect (VSD), a hole between the pumping chambers of her heart. In critical heart failure, she couldn’t roll over or suck from a bottle, because she was so weak.
Her parents in Ethopia were desperate to get her help and turned to Project Mercy, an international nonprofit relief and development agency that operated a compound close to Rute’s village. Project Mercy contacted Patrons of the Hearts for help.
Rute’s parents had no birth certificates, which meant they couldn’t acquire passports, but it was critical for Rute to travel to Jacksonville for surgery as quickly as possible. Project Mercy brought Rute to Jacksonville without her worried parents, and the Ettedguis agreed to be her legal guardians during her stay.
Rute had two surgeries separated by several months. By the time she had recovered enough to be sent home, six months had passed. The Ettedguis took her back to her parents, but Rute refused to eat or sleep and couldn’t be consoled. She had bonded with the Ettedguis, as they had with her.
Rute’s parents asked the Ettedguis if they would raise her. “They didn’t think Rute would survive living with them in Ethiopia,” Hilda says. “They made the biggest sacrifice parents can make.” It was an easy decision for the Ettedguis to make, because she was already part of their family, Hilda says.
Now 9 years old, Rute is healthy. She is bilingual in Spanish and English, as are the Ettedguis’ other two daughters, who are 28 and 29 years old. Even though they were in college when Rute joined their family, Hilda says that all three girls have an incredible connection with each other.
Hilda says, “Rute keeps us young.” Jose says Rute is Patron of the Hearts’ “ambassador extraordinaire.” “She loves the attention,” he says and then laughs.
It takes a lot of generous hearts to help so many damaged ones, and Patrons of the Hearts and Ettedguis and the members of the Patrons of the Hearts team have the hearts and souls to meet the challenge.
Children travel from all over the world come to Jacksonville to receive free treatment for rare heart conditions through the Patrons of the Hearts organization.
Rute, Hilda and Dr. Jose Ettedgui enjoying the Florida sunshine together.
A Night of Art is Good for the Heart Support this wonderful organization by attending the 2016 Artscapade on Friday Nov. 4. Individual Tickets: $100 ($125 at the door) For more info visit foundation.baptistjax.com/poth