Julian George was born in 2018 with a cleft lip and palate. Unfamiliar with the condition, Julian’s mom, Lindsay, dove into researching it so she could be prepared after Julian’s birth.
Pregnant with her first child in 2018, Lindsay George was looking forward to her 20-week ultrasound. But amid the excitement came unexpected news: Her unborn baby had a cleft lip and palate.
Unfamiliar with the condition, Lindsay wasted no time learning everything she could.
“I wanted to be prepared, so I did a lot of research,” she said. “I also have a close friend who is an occupational therapist (who happens to do feeding therapy) who was very helpful. At my baby shower, she made sure I was stocked up on Dr. Brown’s specialty bottles.”
Julian’s treatment began with a nasoalveolar molding (NAM) device which is used presurgery to help reshape the upper jaw, lip and nose.
After her son, Julian, was born in June, Lindsay met with Dr. Ananth Murthy, director of Pediatric Plastic and Reconstructive Surgery and medical director of the James A. Lehman Jr., MD Craniofacial Center and Speech Resonance Clinic, to discuss treatment options.
“Since we live in Fairview Park, it was nice that we were able to meet him closer to home at Akron Children’s Hudson location,” she said. “He was so friendly and fun. I knew he needed to be our doctor.”
While she explored programs closer to Cleveland, Lindsay said none offered the same level of coordinated, multidisciplinary care found at Akron Children’s.
“Dr. Murthy was clear on what the next few months would look like,” she said.
Once she met the rest of the craniofacial team, her confidence in the program only grew.
Although she explored programs closer to their home in Cleveland, Lindsay said none offered the same level of coordinated, multidisciplinary care found at Akron Children’s.
“You could tell they were a cohesive team by the way they communicated with not just me, but with each other,” Lindsay said.
Julian’s treatment began with a visit to craniofacial orthodontist Dr. Nicholas Kochenour to be fitted for a nasoalveolar molding (NAM) device.
“The NAM custom appliance is a presurgical infant orthopedic device that reshapes the upper jaw, lip and nose preparing for the initial surgical correction,” said Dr. Kochenour. “I often call it a baby denture that is seated on the gums and held in place with tape and rubber bands attached to the cheeks to help keep the appliance in place.
“The process is a big commitment for the patient and parents especially, with weekly appointments to slowly adjust and modify the appliance,” he added. “These appointments allow me to get to know the patient and family and is one of the best parts of being on the craniofacial team here at Akron Children’s.”
At 6 months old, Julian underwent his first surgery to repair his cleft lip. At 9 months old, his cleft palate was repaired. Looking ahead, Julian’s next major procedure will involve a bone graft (taken from his hip) to close gaps in the alveolar bone, which plays an important role in helping permanent teeth come in properly, improving speech and making the face look more balanced.
Lindsay quickly noticed improvements in Julian’s cleft lip thanks to the NAM, which she had to remove, clean and retape to his cheeks every night. From July through September 2018, Julian returned weekly for adjustments.
At 6 months old, Julian underwent his first surgery to repair the cleft lip.
“It was like having a whole new baby,” Lindsay said. “His face was put together.”
Three months later, the family returned to Akron Children’s for Julian’s cleft palate surgery. This time, the experience felt less daunting.
“I wasn’t as nervous handing over my baby,” she said. “The surgical nurses were so warm and lovely; I don’t think Julian even noticed the handover.
“The nurses were also very responsive to my questions and concerns,” she added. “I was very concerned about pain management, but they explained how and why they handled it the way they did, and I felt more at ease.”
Julian visits the Craniofacial Center annually for follow-up care. Although he doesn’t require speech therapy, the speech therapist makes sure there is proper movement and air flow, so his speech isn’t affected.
Julian stayed overnight after each surgery and went home the following day. He had both operations before his first birthday.
Today, Julian visits the Craniofacial Center once a year for follow-up care.
“We see everybody all in the same day,” said Lindsay. “Although Julian doesn’t need speech therapy, the speech therapist makes sure there is proper movement and air flow, so his speech isn’t affected.”
Looking ahead, Julian’s next major procedure will involve a bone graft — taken from his hip — to help close any gaps in the alveolar bone, which plays an important role in helping permanent teeth come in properly, improving speech and making the face look more balanced. At the same time, he’ll undergo a nose revision. Further down the road, he may also need jaw surgery to correct a severe underbite.
Despite early speech delays, Lindsay says Julian has made remarkable progress.
Now age 7, Julian is thriving. He’s in the 99th percentile for height and attends the Global Ambassadors Language Academy in Cleveland, where he primarily speaks Spanish. He’s also a big fan of trains and loves to read — especially Spider-Man comics.
“He wasn’t far behind, but he was behind. He still has a little trouble with his L’s,” she said. “He can now make whistling noises, which he is very proud of.
“Seeing his smile is the best part,” she added. “I couldn’t always see his smile because of the NAM, but now I can.”
Lindsay wants others to understand that cleft lip and palate is not just a cosmetic issue.
“This is a complex medical issue that can’t be fixed by just one surgery,” she said. “We see a team of specialists in the Cleft Clinic at Akron Children’s that include orthodontia, plastic surgery, ENT, speech and a dentist.”
Although many children with cleft lip and palate face feeding challenges or underlying genetic conditions, Julian did not.
“He ate like a champ,” Lindsay said.
Now 7, Julian is thriving. He’s in the 99th percentile for height and attends the Global Ambassadors Language Academy in Cleveland, where he primarily speaks Spanish. He’s also a big fan of trains and loves to read — especially Spider-Man comics.
Learn more about Akron Children’s Craniofacial Center.
