LANCASTER, Pa. (WHTM) — The Stephens family calls it their smileversary. Adorable pictures of daughter, Arieay, and son, R.E., show lots of grinning and joy, which is in stark contrast to the first images of R.E.
“We were originally told he would have a cleft lip and palate at just 12 weeks,” Jessica Stephens, R.E.’s mother, said. “When we were first given the diagnosis it was just shock.”
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Shock led to fear, which led the Stephens to the Lancaster Cleft Palate Clinic.
“He was just a few days old. I mean, they saw us immediately. We came here before we saw a pediatrician,” Jessica added.
The family lived just miles away but had never heard of it — until they needed it.
“This place is an absolute gem and it provides world-class care. Interestingly, we have 20,000 people who drive past our front door on Lime Street every day and the vast majority have no idea what we do within the confines of this building,” said Elizabeth Prada, DMD, MPH, executive director at the clinic.
But to medical professionals near and far, the cleft palate clinic put Lancaster on the map.
“When my grandfather set up the clinic, it was the first one in the world dedicated to care of kids with facial birth defects,” said Ross “Rusty” E. Long, DMD, MS, PhD, director emeritus and head of research at the clinic.
H.K. Cooper, Long’s grandfather, started the clinic in 1938 and started the team concept of bringing the necessary disciplines — surgery, dentistry, orthodontics, speech, audiology, and more — together under one roof.
“They are unique problems and require us to collectively to come up with unique solutions to the unique problems,” Long said.
It’s world-class care without a world-class price tag.
“All of the patients you see with clefts are eligible for medical assistance, so we’re operating on medical assistance fee schedules, which everybody knows are not adequate to support by themselves a clinic like ours,” Long added.
Thanks to friends and donors, the clinic has kept its doors open and kept its independence, a rarity in today’s health care environment.
“We’re not being pulled along with a major organization that might one day like you and the next day decide you’re losing too much money and you’re cut, and that has happened across the country with regards to cleft palate centers,” Long said.
But dollars are tight, and facility improvements are desperately needed — modern equipment, a cheerful, family space, ceilings without holes or watermarks.
“The face of this facility doesn’t present itself very well, and I find that ironic that we care for people’s appearance and helping them achieve their maximum capacity in life and yet our own facility doesn’t achieve that,” Prada said.
But to the moms and dads of kids with clefts, this is a place of beauty and comfort at a vulnerable time.
“You will have parents come into this clinic in tears because they were just at the supermarket and had a teller saying, ‘What’s wrong with your child?'” Jessica said.
Correcting that wrong drives the dedicated team.
“I’ll try to speak to that but I still get so emotional about it,” Thomas D. Samson, MD, FAAP, pediatric plastic surgeon, who did R.E.’s surgery and countless others, said. “When that child is back there that kid is my kid and I’m gonna do for your child exactly what I would do for my child. I’m not gonna cut corners, not gonna take chances. We’re gonna keep things safe and do as perfect a job as we can possibly do.”
For Jessica, knowing there’s that level of support from a medical professional makes her emotional, as well.
“Anytime somebody says ‘Oh he had a cleft?’ and you show them the before and after pictures, it’s incredible what they were able to do,” Reggie Stephens, R.E.’s dad, said.
Jessica said looking back at the first pictures of R.E. is amazing to see what he looks like today versus the day he was born.
“When they start here, the cleft that they come with is one of the defining features of their lives and their families’ lives and when they leave here the cleft is a non-issue. It’s not a defining feature, it’s a non-issue,” Long said.
To learn more about the Lancaster Cleft Palate Clinic, visit the organization’s website by clicking here.