Smiling into bright future after ordeal for girl born with rare condition

Two-year-old Carter Yaeger sat cheerfully at the kitchen table, dropping tortellini to the family dog while her mom chatted on the phone. It’s the kind of everyday scene familiar to many families. But behind this ordinary scene was an extraordinary journey.

“Carter was born with a condition known as Robin sequence, or Pierre Robin sequence, which affects approximately one in every 8,500 children. It’s a rare medical condition,” explained Phayvanh Pecha, M.D., a head and neck surgeon at MUSC Children’s Health. “It’s characterized by a small, recessed jaw, a cleft palate and a tongue positioned further back than normal, which can obstruct the airway.”

Megan Yaeger, Carter’s mother, recalls the moment they realized something was different. “Her jaw was very recessed at birth. It was immediately clear something wasn’t normal.”

 

Fortunately, Carter was born in Charleston, home to MUSC Shawn Jenkins Children’s Hospital – one of the few places in South Carolina equipped to perform the specialized surgery she needed. 

 

But the path forward wasn’t easy. Carter couldn’t breastfeed due to her cleft palate, requiring special bottles and daily speech therapy to help her feed effectively without exhausting herself. “That first week was the hardest of my life,” Yaeger said. “No matter what I did, she wasn’t gaining weight.”

At one week old, Carter was readmitted to the hospital with a “failure to thrive” diagnosis. That’s when Pecha joined the care team. “My role is to guide parents through what to expect,” she said. “It’s terrifying when your baby can’t breathe or feed properly and isn’t gaining weight.”

Despite weeks of monitoring and interventions, Carter wasn’t improving. Pecha recommended a complex procedure called mandibular distraction – a multi-step surgery to lengthen Carter’s jawbone and reposition her tongue. She would also need cleft palate repair around her first birthday.

The cause of Carter’s condition remains unclear. “She didn’t have any genetic indicators,”  Pecha noted. “Robin sequence can be part of a syndrome, which is why it’s critical to involve a multidisciplinary craniofacial team.”

 

MUSC Children’s Health is home to one of only two American Cleft Palate-Craniofacial Association-accredited clinics in South Carolina. “We have audiologists, dentists, orthodontists, surgeons, speech pathologists on the team. It truly takes a village to care for children with complex craniofacial differences,” Pecha said.

During Carter’s mandibular distraction surgery, Pecha made precise cuts on both sides of her jaw and inserted a device called a distractor. Over several weeks, the device gradually lengthened the jaw, allowing new bone to form. Six weeks later, the distractor and pins were removed in a second surgery.

“After a few weeks in the pediatric ICU, we finally got to go home,” Yaeger said. “She was feeding well; her carbon dioxide levels were stable, and she was acting like a normal newborn – well, as normal as a newborn can be,” she added with a laugh.

 

Carter’s jaw will continue to grow with her, and she returns annually to the MUSC Children’s Health’s craniofacial team to monitor her development, speech and hearing. Thanks to early intervention, Carter is thriving.

Her mother offered a message to other families facing medical challenges. “You’re not alone. There’s always another family going through something unimaginable. Build your village and be grateful for the small things. One quote that’s always resonated with me is, ‘Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.’”

And for now, her daughter’s tomorrow looks bright. “I hope this experience teaches her resilience and appreciation,” Yaeger said. “And I hope our story raises awareness. Everyone faces struggles in life. It’s how we respond to ours that defines us.”