There might be an imperfection.
What could that mean? It’s the last thing a mother wants to hear during a regular ultrasound right before her due date.
The nurse was concerned enough to step out of the room to talk to Michelle’s pediatrician, but only after saying something about a “possible cleft.” Michelle immediately grabbed her phone and frantically started searching for random medical information that would only scare her more.
The decision was made to induce labor so they could see what they were dealing with. Myla was born the next day with a cleft lip. Her palate, thankfully was unaffected. This would lessen the burden of her future treatment.
“One of my nurses had two babies with clefts and, she recommended the Cleft and Craniofacial program at Johns Hopkins All Children’s Hospital,” Michelle recalls. “I was so afraid and unsure about what we were dealing with.” Led by Alex Rottgers, M.D., assistant professor of plastic and reconstructive surgery in the Johns Hopkins University School of Medicine, the Cleft and Craniofacial Clinic arranged for Michelle and Vladimir to meet with multiple specialists all at once to discuss a plan that will carry through the first 18 years of Myla’s life. It’s the approach they use with most patients, depending on the severity of the case.
“We saw Myla a little later than we like to start with parents,” Rottgers recalls. “We didn’t get to meet them prenatally. These days ultrasounds tend to take away those last-minute surprises that can really affect the joy of giving birth.” Rottgers sat down with Michelle and Vladimir for 30 or 40 minutes and went over everything they were going to need to know.
“We have a regular game plan that we tailor to the specific needs of each patient,” he explains. “Myla had an isolated cleft lip with no palate involvement, so she will not need as many treatments as she grows—jaw surgery, bone grafting, speech therapy, but we do recommend that she has some final adjustments to her nose as a teenager.” Myla’s parents were relieved.
“Everyone we dealt with was great,” Michelle recalls. “We met with the entire cleft team—Dr. Rottgers, an audiologist, a social worker, a speech therapist and a developmental pediatrician.”
Myla’s case was involved, but the versatile team also includes dentists, orthodontists, ophthalmologists, neurosurgeons, and ear, nose and throat specialists as needed.
Families appreciate having access to a complete multidisciplinary clinic team ready to meet a family’s needs all in one location with fewer visits and better coordinated care—and, most important, a board-certified plastic surgeon who has dedicated his career to the treatment of patients with facial differences. The Johns Hopkins All Children’s Cleft and Craniofacial Center is also working to implement new, state-of-the-art outcome metrics so they can continue improving the care and outcomes for their patients.
Rottgers and his Cleft and Craniofacial program work closely with the Johns Hopkins Medicine team in Baltimore on a collaborative craniofacial research program designed to benefit patients at both locations.
Michelle and Vladimir brought Myla in at 4 months for the cleft surgery. “We were instructed every step of the way,” Vladimir remembers. “The nurse called us twice during the actual surgery and gave us updates. We were completely prepared for what she would look like, where we would see tubes coming out of her and everything when she was in recovery. That helped a lot.”
Myla’s big brother, Sebastian, who was 2½ when she was born, never mentioned her cleft lip, but after the surgery, he said, “Look. She’s fixed!” Sebastian is very protective and after surgery, he would warn people who went near Myla, “Don’t touch her face, she’s healing.”
Now 18 months old, Myla is a rock star wherever she goes. “With those curls and blue eyes, people stop me all the time and say, ‘That’s the cutest baby,’” Michelle gushes. She knows their family made the right decision with Johns Hopkins All Children’s and Rottgers. “He just put us at ease right off the bat. His attitude was, ‘This is no problem.’ It really helped.”
“These are normal kids. They just need a few extra trips to the doctor,” Rottgers concludes. “Care for patients with cleft lip and cleft palate continues through their childhood. The most critical steps in their repair are done during infancy, but some have to wait until key periods of growth and development. Our promise is that, from the minor to the most severe case, our comprehensive program of experts will have them ready to go into the world as confident young adults. It’s so rewarding to have the opportunity to be able to follow these children throughout their childhood and watch them grow so beautifully and successfully.”
Myla’s family agrees.
Cleft and Craniofacial Clinic
Primary specialties involved: Plastic surgery, neurosurgery, audiology, orthodontics, otolaryngology, psychology, speech therapy, dentists and social workers
Clinic availability and locations: Generally offered the fourth Tuesday each month at Outpatient Care Center, 601 Fifth Street S. in St. Petersburg; and the third Friday of each month at Outpatient Care, Tampa, 12220 Bruce B. Downs Blvd. in Tampa
Primary treatments available: Address common and uncommon conditions such as cleft lip, cleft palate, craniosynostosis, hemifacial macrosomia, Apert syndrome, Crouzon syndrome and Treacher Collins syndrome
Referral required? Only as required by health insurance provider
For more information: Call Cathy Conley, R.N., at 727-767-2930.