Finding hope and healing after a cleft lip and palate diagnosis

Anna Meyer was born with cleft lip and palate. Before she turned 1, she underwent surgeries to correct both conditions.

Pregnant with her second child in 2021, Sarah Meyer of Strongsville went into her 20-week ultrasound expecting a routine checkup. Instead, she and her husband, Nick, learned their baby girl would be born with a cleft lip and palate – a condition they knew very little about.

“At first, we were terrified,” Sarah recalled. “We didn’t know what her long-term prognosis looked like. It’s scary not knowing who to talk to or where to get information.”

Cleft conditions occur early in pregnancy, when a baby’s lip or the roof of the mouth doesn’t form properly. A cleft lip creates a gap in the upper lip, while a cleft palate leaves an opening in the roof of the mouth. Although the Meyers had heard of the condition, they didn’t know what it meant for their baby’s future.

Anna’s parents were willing to travel to find Anna the very best care. After interviewing several craniofacial teams at other hospitals, they chose Akron Children’s.

Searching for answers

Sarah leaned on a friend’s advice and joined a Facebook group for parents of children with cleft conditions. There, she found both support and direction as she researched the condition and searched for care options for her baby.

“I was willing to travel for the very best care,” Sarah said. “I looked at programs in northeast Ohio as well as Pittsburgh and Cincinnati – and I met with the cleft teams at each hospital.”

Ultimately, the family chose Akron Children’s James A. Lehman Jr., MD, Craniofacial Center after meeting pediatric craniofacial surgeon Dr. Ashish Francis.

“Dr. Francis was very patient, calm and reassuring,” said Sarah. “He explained every step of what the process would look like from the day our daughter was born until she turned 18. I felt confident we were in good hands.”

Anna was fitted with a nasoalveolar molding (NAM) device soon after her birth. The NAM is a custom-made appliance that reshapes the upper jaw, lip and nose before surgery. It’s like a baby denture, seated on the gums and held in place with tape and tiny rubber bands.

Early treatment begins

Baby Anna arrived with no major feeding complications – something many families of cleft-affected children face. “We were prepared, but she fed beautifully from her specialty bottles,” Sarah said.

At her first appointment, Anna was fitted for a nasoalveolar molding (NAM) device by craniofacial orthodontist Dr. Nicholas Kochenour.

The NAM is a custom-made appliance that reshapes the upper jaw, lip and nose before surgery. It’s like a baby denture, seated on the gums and held in place with tape and tiny rubber bands.

Each week, Anna returned to Akron Children’s for small adjustments. “It was amazing to watch how her little face changed as the device did its job,” said Sarah.

Facing surgery

The family faced a setback when Anna’s first cleft lip surgery was postponed after a positive COVID test result the day before. At 9 months old, she finally underwent the surgery with Dr. Francis, followed by cleft palate repair at 11 months.

“We were incredibly anxious,” Sarah admitted. “It was hard to see them take her back. But the surgical team gave us updates throughout the 5-hour procedure, which helped us get through it.”

When Sarah finally saw Anna, she was surprised by how the surgery changed her smile.

“Her lip was taped up at first, but once the tape came off, we saw her beautiful new smile,” she said. “It was different from the smile we had gotten to know, but it was such a blessing.”

Anna was back to herself just a few days after her lip repair surgery, but recovery from the palate repair took about 2 weeks as Anna adjusted to new ways of eating. “The biggest difference I noticed was that mashed potatoes stopped coming out of her nose!” Sarah said.

Now 3 years old, Anna is thriving. She loves to dance, sing and play with her big brother, Liam. This spring, she proudly took the stage in her very first dance recital.

Moving forward with confidence

Now 3 years old, Anna is thriving. She loves to dance, sing and play with her big brother, Liam. This spring, she proudly took the stage in her very first dance recital.

Looking ahead, Anna will need bone graft surgery when her adult teeth come in to close gaps in the alveolar (gum line) bone, which helps permanent teeth come in properly and supports facial balance. Additional procedures may follow as she grows if needed.

For Sarah, the journey has been challenging but also rewarding.

“You don’t ask to be put in these situations, but it’s rewarding to know as a family that we still got through it,” she said. “We leaned on our families for emotional support, and we also leaned on the Facebook group community to answer cleft related questions. Both were invaluable in their own ways.

Her advice to other parents just starting this journey?

“Trust the process, lean on your care team and know you are not alone. The outcome is so worth it,” she said.