Reconnecting with Lilliam After More Than 10 Years

Nicaragua, Congenital Condition Patient Story
May 31, 2018
The year was 1987, and Marlon and Violeta in Nicaragua were like any other parents of a new baby girl—concerned for her wellbeing and filled with hope that she would have a good life. When little Lilliam was 3 years old, however, they began to notice something happening to her face. There was slight discoloration in the skin, and her left cheek did not fill out like her right one. Initial trips to a local doctor proved unhelpful. It wasn’t until they were able to see a dermatologist in Managua that they were able to get a real diagnosis, which wasn’t good.

The doctor reported that Lilliam had Parry-Romberg Syndrome, a rare condition which prevents facial tissue from developing properly, leaving the face disfigured and sunken in. “Your daughter’s fate is in God’s hands now,” the doctor said. “There is no cure, and nothing can be done.” Marlon and Violeta’s hearts broke as they prepared themselves and Lilliam for the ridicule and stigma she would face.

Life did become difficult for Lilliam. As she grew up, the abnormality of her face worsened, and other children were cruel. They stared at her and called her names, and she wanted to stop going to school. “Every single night,” she recalls, “I went to sleep crying.”

Refusing to give up on finding help for their daughter, Lilliam’s parents met with countless groups of doctors from many countries. Each offered Lilliam the same diagnosis, but none could offer treatment. Finally, when Lilliam was 12 they were referred to Drs. Mario Perez, Humberto Briceno and Ivette Icaza, our ReSurge medical partners who have a reconstructive surgery unit for children in Managua called Aproquen. They instructed Lilliam to travel to Ingenio San Antonio, where a team of ReSurge (then Interplast) volunteers was working. She met with volunteer surgeon Dr. Gary Brody, and he agreed to help her. Lilliam’s parents could not believe it. Hope for their daughter at last!

Dr. Brody and the ReSurge team used a flap of tissue taken from Lilliam’s abdomen and inserted it into the sunken left cheek, filling it out and adding structure to her face. Her parents gasped when they saw her in the recovery room. The change was dramatic.

Over the next three years, ReSurge sent Dr. Brody and a team back to Nicaragua annually. Each time they followed up with Lilliam and made small surgical revisions to her face. Each time the bond between the little patient and the doctors and nurses who cared for her deepened.

Given a chance at a different life, Lilliam flourished as the years passed. She attended university and became an accountant. She reconnected with an old high school friend, Milton, who eventually became her husband and father to their two children.

Now a young professional and mother, Lilliam never forgot about the people who helped her. “Something told me I had to go see them and show them how my life turned out,” she says. She recently tracked down Dr. Icaza, who was thrilled to reconnect and invited her to come meet with our ReSurge team that was just in the country. Lilliam excitedly agreed.

Once again, Lilliam and her family—now, much bigger—got in a car and drove to Ingenio San Antonio, but this time with a different purpose. They wouldn’t be coming for treatment, but to say thank you.

When Lilliam arrived and reunited with Dr. Icaza they embraced tightly, greeting one another like family. Lilliam then went around the hospital looking for each of the doctors and nurses who had helped her so long ago. When she introduced herself to the ReSurge team, our volunteers marveled at Lillian’s transformed appearance. Everyone was overjoyed to see Lilliam, vibrant and happy with her family, and her gratitude for the care she received shined through.

When asked if she had a message for Dr. Brody, tears welled up in her eyes. “I cannot find words to express how thankful I am to Dr. Brody,” she said, wiping her face. “Look at how he changed my life.”

 

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