Kimberly and Bill received alarming news following a 20-week ultrasound for their first child: their son would be born with a bilateral cleft lip and cleft palate, among the most severe congenital facial abnormalities.
“We were nervous and didn’t fully understand what it would mean for the rest of the pregnancy or birth,” Kimberly said. “But we knew that we needed to start researching cleft teams.”
While cleft lip and palate are common, occurring in about 1 in 700 live births, bilateral cleft lip and palate has significant indications for appearance and function. Babies with Carter’s condition have disfiguring splits in their top lip and a flattened, broad-based nose. The premaxilla, or front portion of the upper tooth-bearing bone, is everted out of the mouth and displaced to one side, with an isolated covering of unidentifiable lip tissue.
The condition causes difficulties with eating, hearing loss, ear infections and, later in life, speech and significant dental problems.
Fortunately for the suburban Chicago family, expertise on the condition was close by. Kimberly met with The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago after the initial diagnosis.
“All of the doctors explained everything very well and listened to all of my questions and concerns. After leaving that day’s session with the team, I knew that I didn’t need to go to any other consultations at other hospitals. I felt really good about Lurie Children’s and knew this team would be the right fit for my son,” Kimberly said.
Once the couple’s son, Carter, was born, the family connected with Lurie Children’s Plastic & Reconstructive Surgery division, which leads the Cleft Lip & Cleft Palate Program. At just seven weeks old, Carter met Dr. Arun K. Gosain, Division Head of Plastic & Reconstructive Surgery, and Dr. John Ford, an orthodontist in Lurie Children’s Division of Dentistry and a member of the Cleft Lip & Cleft Palate Team.
Carter would need surgery. His circumstances made him a candidate for a special presurgical technique, nasoalveolar molding (NAM), that helps reduce scarring and improve surgical outcomes.
The NAM technique involves fitting a newborn for a custom-made appliance that goes inside their mouth with stents off the mouthpiece into the nose. It is held in place by surgical tape that a caregiver must change daily. Every week for several months, Carter’s parents visited Dr. Ford at Lurie Children’s Lincoln Park location in Chicago to modify the molded appliance to shape the roof of the baby’s mouth. The NAM device shapes, molds and approximates the ectopically displaced and everted premaxilla with the two other sectionalized portions of the teeth-bearing bone. It stretches and forms the cartilaginous contours of the nose, providing for a more normalized anatomy for the surgeon to work with.
“This therapy, in combination with primary lip and nose repair surgery, is transformative for patients with cleft lip and cleft palate,” said Dr. Ford, who has special training in nasoalveolar molding. “NAM therapy also decreases scarring and reduces the number of revision surgeries cleft patients require later in life.”
Success of NAM therapy relies heavily on the efforts of a child’s caregivers to ensure the molding device is taped properly and positioned well, Dr. Ford said.
When he was about eight months old, Carter had his first lip and nose repair surgery with Dr. Gosain. Kimberly said she and Bill could not be happier with the results.
“We are so happy about how his lip and nose repair turned out and are glad that we stuck with the NAM appliance. We had challenges along the way, but it was all worth it. We are so appreciative of the time and effort that Dr. Ford put into Carter’s case to ensure the positive outcome that we had,” Kimberly said.
Now at 14 months old, Carter is learning to walk, and loves to play Peekaboo and read books with his mom and dad. His cleft palate surgery was in late May and is recovering well.
“Lurie Children’s is known to have the best doctors, we knew that coming in,” Kimberly said. “What we didn’t know was how caring and supportive the staff are. They really listen to you and care about the needs of your child. They make you feel like you are the only patient and so important.”