GlobalJax Profile: Hilda Ettedgui

May 27, 2014

For almost a decade, a Jacksonville-based organization has brought children from across the globe to the First Coast for life-saving medical procedures.

In our third GlobalJax profile, we'll hear the story of the co-founder of Patrons of the Hearts, and how one patient stole her heart and changed her family.

Patrons of the Hearts brings children from developing countries with congenital heart problems to Jacksonville for life-saving surgeries. Since 2005, it's helped 77 children from 21 countries, including one little girl from Ethiopia.
 
Today, 6-year-old Rute is full of life. That wasn't always the case. Born with congenital heart problems, as an infant she was too weak to suck milk from a bottle or even roll over.
 
"When she came she was really ill, weighed less than six kilos, like 11 pounds by the time she was 13 months," said Hilda Ettedgui. She and her husband, Dr. Jose Ettedgui, chief of the division of pediatric cardiology at UF Health Jacksonville, are the co-founders of Patrons of the Hearts.
 
They launched the organization after Dr. Ettedgui went overseas on volunteer medical trips to treat children with congenital heart disease.
 
Patrons of the Hearts is a program of Baptist Health Foundation that provides medical care through a partnership between Wolfson Children's Hospital and the University of Florida Pediatric Cardiovascular Center in Jacksonville.
 
The goal of bringing the children to the First Coast is to to improve outcomes.
 
"He was hoping if we could bring the children here they would have a better rate of success," Hilda Ettedgui said. "We just starting planning what we would need to do to bring the children over here instead of taking the whole team over there."
 
"It would probably be more cost-effective, the child would only have to be there four to five weeks and return back home with their parent and have the highest quality of medical care available to them," she said.  
 
Rute came to Jacksonville from Ethiopia five years ago.
 
"She was very, very sick when she first came and after a week being here with us she had her first surgery and start of feeling a lot better so she started moving around and talking with us and becoming part of the family that first day," Ettedgui said.
 
The bond was instant.
 
"She was patient number 18 of our program, and the first patient to come without a parent. So Jose and I were her legal guardians while she was here. She was supposed to stay about five weeks, have her heart repaired, have her surgery and go home," she said.
 
But Rute didn't go home for five months. Born with a hole between the major two pumping chambers of her heart, she needed a second surgery.
 
"They cut my heart, and what they did, they fixed my heart, the two holes that were on the side and they sewed it, no they didn't sew it, they knit it and then they sewed me back together," Rute said.
 
The Ettedguis then took Rute back to her native Ethiopia to reunite her with her parents.
 
"She grew up in a little village, a very small village, in a little village, a beautiful village that had a huge old, old tree and a well in the middle of the village where everyone got their water from," Ettedgui said.
 
"She had a hard time getting back to that family I think and they were very worried that she would not do well in Ethiopia and she would do better if she was here and they basically wanted us to raise her because they knew that we loved her and that she loved us."
 
The Ettedguis, originally from Venezuela and the parents of two grown daughters, are now raising their daughter Rute in Jacksonville.
 
Ettedgui describes Rute as, "African-Latina" or "Afro-Latina."  
 
"And I call my mom and dad Venezuela-Latinos, Venezuela-Latinas," Rute says.
 
They look forward to the day the adoption becomes official.
 
"What have you brought to my family?" Ettedgui asks Rute.
 
"Happiness, love," Rute replies.
 
"Love, incredible energy," Ettedgui agrees. "She keeps us young."

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