2 women turn their personal experiences with cleft palate into a mission of awareness
MIAMI - Flipping through a photo album documenting her early years, Fort Lauderdale resident Stephanie Heintz points out that what you can't see in the pictures is that she was born with a cleft palate, a birth defect in the roof of the mouth.
She was also born with a cleft lip, which is an opening that occurs in the upper lip when facial structures don't close all the way in an unborn baby. Heintz has transformed her childhood experiences into a powerful platform for advocacy and awareness.
"Some of it just comes from lack of awareness, which is why I like to talk about it," Heintz said.
With more than 500,000 followers on TikTok, she focuses on physical and mental health, highlighting non-surgical beauty treatments for those with cleft conditions.
"I think it's really important for me to put my face out there so that kids can feel like there's a community and that there's a place for them and that this is something that can be beautiful," Heintz said.
She said she had her first lip repair when she was about three and a half months old.
While Heintz underwent three major surgeries as a baby, some individuals with cleft conditions may endure up to 15 procedures. Heintz also dedicates her time to Smile Train, the world's largest cleft-focused organization. Her advocacy recently took her to Washington D.C., to support the Enduring Last Smiles Act or ELSA, which is a bill that would require private health insurance to cover the diagnosis and treatment of birth defects.
"I was there representing Florida. I met with senators and Congress people, just really trying to get this guaranteed so that parents do not have to waste their energy fighting insurance companies," she said.
Lisa Olivarez, originally from Sunrise, Florida, shares a different perspective. When she adopted 9-year-old Juan from Guatemala, she turned to Smile Train for help with his unrepaired cleft palate.
"His mouth was severely infected as well as no roof at all to the top of his mouth. So I knew he needed pretty immediate medical care," Olivarez said. "I got in touch with a friend and within minutes we were connected with Smile Train."
Smile Train facilitated Juan's first successful surgery in Houston.
"I think the most important thing with Smile Train is the community that it builds and that community sense that it really wraps us in," said Olivarez.
Both Heintz and Olivarez recently spoke at CleftCon 2024, sponsored by Smile Train.
"I'm so blessed to be a part of Smile Train and be a part of their efforts," Heintz said.
Olivarez added, "Smile Train's goal is to really empower parents and to set them up with ways that services can be used, and that is huge."
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