Stephanie and Nick were excited to find out they were expecting their third child. What they didn’t expect was to learn that baby Luna would be born with a cleft lip. The diagnosis turned the couple’s excitement into tears and an overwhelming number of questions. The couple got answers and a trusted partner in Luna’s cleft lip journey at Children’s Minnesota.
Diagnosis during pregnancy
The cleft lip was first noticed during the 20-week anatomy scan in November 2024. Soon after, it was confirmed that baby Luna would be born with a cleft lip on the left side and possibly a cleft palate. Stephanie and Nick were then referred to the ear, nose and throat (ENT) and facial plastic surgery program at Children’s Minnesota and Brianne Roby, MD, director of the cleft program.
At the first appointment, Dr. Roby answered the couple’s questions about what to expect after Luna was born. She went over how Luna’s cleft lip repair surgery would work and when it could happen.
“After our appointment with Dr. Roby we felt she was perfect to help our little girl succeed in her cleft journey,” Stephanie said. “She was so detailed and answered every question I had – sometimes even before I asked it.”
Dr. Roby partnered with Stephanie and Nick to make a comprehensive cleft lip treatment plan just for Luna – including a new presurgical treatment option that recently became available at Children’s Minnesota.
Presurgical treatment for cleft lip
Luna is one of the first patients at Children’s Minnesota to use the new presurgical cleft lip treatment called PLANA (presurgical lip, alveolus, and nose approximation). It’s designed to help align the displaced lip, gum line and nose of babies born with a cleft lip before their first surgery.
With PLANA, there is no mold that sits in the baby’s mouth like traditional presurgical treatment methods. The less invasive approach can reduce clinic visits for families since it’s designed to be managed at home. Before meeting with Dr. Roby, Stephanie researched and reviewed other parents’ experiences with different presurgical treatment options. But she hadn’t heard about PLANA.
“We kind of knew then when Dr. Roby explained how it worked that it was what we wanted to do for Luna,” Stephanie described.
Babies use the PLANA treatment until their first surgery to repair the cleft lip, which typically happens at 3-4 months of age.
Learn more about the PLANA treatment option
Experience with presurgical treatment
Luna was born in March at Hudson Hospital in Hudson, Wisconsin, near the family’s home. After her birth, it was confirmed that Luna also had a cleft palate.
A week later, the family brought Luna to see Dr. Roby and Noelle Morrell, speech pathologist in the ENT and facial plastic surgery program. During that appointment, Luna started PLANA. Stephanie admits there were hurdles when managing the treatment at home. But the support from Noelle and Dr. Roby helped her along the way.
“They were always available to answer our questions. The response speed was incredible. We wouldn’t expect an answer until maybe the next day, but we’ll get one in an hour,” Stephanie remembered.
Luna gets her ‘forever smile’
In June, Luna had her initial cleft lip repair surgery performed by Dr. Roby. She arrived at the hospital in a special onesie her cousin made that read ‘I get my forever smile today.’
The procedure went as planned, and the family was back home the next day.
“She took her bottles right away like a champ and has been since. She’s doing so well with recovery!” Stephanie said.
Luna will have surgery to repair the cleft palate when she is closer to 1 year old and possibly other surgeries as she grows up.
“We see our patients for years to ensure that kids born with cleft lip and palate grow up happy, healthy and have the confidence to thrive. We want kids to know that a cleft lip or palate does not define who they are,” Dr. Roby said.
For families just learning their child will be born with a cleft lip and palate, Stephanie said it’s important to take it one step at a time. “In the beginning, it’s overwhelming with all the unknowns, but just know that you are not alone. The care team is there to guide you every step of the way.”
