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A lifeline for Sofia

Presbyterian Hospital heart surgeon Dr. Bill Stein lets 3-year-old Sofia Clavel of El Salvador listen to her heartbeat while her mother, Yena Beatriz Clavel, second from left, looks at her in the arms of Vanessa Medina, who hosted them in Albuquerque. (Adolphe Pierre-Louis/Albuquerque Journal)

 

Editor’s note: This story was updated to correct the name of Dr. Ricardo Ortega.

Copyright © 2019 Albuquerque Journal

Little Sofia Adriana Perla Clavel had a very special third birthday party Sunday.

It was the celebration of a journey that saved her life and formed ties between her and her mother and the Albuquerque family that has hosted them the past several weeks.

Sofia Adriana is the latest of several children brought to the United States for lifesaving surgery, thanks to the Southwest Chapter of Healing the Children, part of a nationwide organization that arranges free medical services for severely ill children all over the world.

Healing the Children’s Southwest Chapter collaborates with an agency in El Salvador and locally with Presbyterian Healthcare Services, which donates services of its staff and facilities.

During a delicate four-hour operation on Feb. 21, a medical team headed by Presbyterian pediatric cardiac surgeon Dr. Bill Stein fixed a hole, grafted a new section of a blood vessel and made other complex repairs to Sofia’s tiny heart.

Within a few days, she was able to leave the hospital and enjoy eating pizza with Vanessa Medina’s family, who volunteered to provide a home for the little girl and her mom before and after the surgery.

Sofia was born to a poor family in Gutierrez, a village in the humid hilly Chalatenango region of El Salvador. Nurses quickly noticed the baby had a heart murmur and her skin looked bluish. Fortunately, her mother, Yeni Clavel Portillo, talked to a social worker who contacted Regalo de Vida, the agency that works with Healing the Children. The agency brought Sofia to a hospital in the capital city of San Salvador more than two hours away, where tests showed she had multiple heart defects, a rare condition called Tetralogy of Fallot. Together, the defects inhibit the heart’s ability to pump oxygenated blood to the body. Just eating a meal causes these children to break out in a sweat as their small bodies struggle with the energy demands of the necessities of daily life. Left untreated the condition typically proves fatal within a few years.

“Without surgery, nearly all of them pass away in their first decade of life,” Stein said.

The process to bring a child to the U.S. for such an operation is long, bureaucratic and complex.

“There’s a lot of balls in the air at the same time,” said Dr. Ricardo Ortega, a New Mexico physician who volunteers with Healing the Children. The organization has to obtain clearance from the U.S. State Department.

“This is a very big deal because of current immigration issues — to make sure that when a child comes, they are going to go back and they don’t just disappear into the underground, ” said Ortega. “It’s months and months of preparation before anybody buys a plane ticket.”

The journey itself was a difficult undertaking for Sofia’s mother. She’d seldom been out of their village and had never been on an airplane.

“I was very nervous to come to a place that I didn’t know, and with her needing surgery,” Yeni Clavel Portillo said in Spanish.

But she realized the importance of the trip. She’d heard of other children in her community with the same condition who had died.

Arriving in Albuquerque, Sofia’s already struggling heart faced another challenge – the city’s altitude.

“When I first saw her, she looked like a little blueberry,” said Stein, referring to the telltale skin color of children whose hearts aren’t able to pump sufficient oxygen-rich blood to their bodies.

“She was definitely on that pathway where if you don’t operate on her, she would not live,” he said.

Within two weeks of the surgery, however, Sofia was happily playing dress-up, eating her favorite frosted animal crackers and enjoying the company of the Medina children, Xander, 13, and Inez, 14. She and her mom will return home to El Salvador on March 21.

“She’s such a personality. When she leaves, it’s definitely going to leave a hole in our home,” said host mom Vanessa Medina.

Medina heard about Healing the Children from a member of the organization’s board when the two volunteered together at their church nursery. The organization depends on volunteer families to host children while they are in the U.S. for their medical stay.

Medina and her husband had wanted a large family but complications with her two pregnancies ruled out more births. After the experience with Healing the Children, they have undertaken training with a foster care agency that serves youngsters with disabilities and hope to be able to adopt a child in the future.

“This experience with Sofia cemented in our hearts that we are ready to expand our family,” said Medina. “She’s changed our lives.”

The warmth of feeling is mutual. Sofia’s mother told Medina that when they return home it will be as if she is leaving behind a new family in Albuquerque.

Healing the Children Southwest Chapter is part of a nationwide organization that has helped more than 260,000 children with severe medical conditions, and their families, from more than 100 countries around the world. More information about Healing the Children is available on the organization’s website: Healingthechildren.org.

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