Lifelong Cleft Care That Grows With Your Child

Discovering your baby has a cleft lip or cleft palate can bring instant questions and concerns. Though they may need immediate care after birth, rest assured that there is a wealth of expert support ready to guide you at every step.

Cleft lip and cleft palate are among the most common congenital conditions in the U.S., but the AdventHealth for Children team understands that every single child is unique — and that the best cleft care goes far beyond a single repair surgery. Children born with facial differences and their families need care that grows with them over time, ensuring they continue to have what they need to live their healthiest lives.

Below, Dr. Raj Sawh-Martinez, Ashley Nestle, PA-C and Luz Diaz, PA-C, share more about our team-based lifespan approach and the stages of cleft care at AdventHealth for Children.

Specialized Cleft Care Starts Even Before Birth

A cleft happens when tissue in the face and mouth doesn’t fuse together properly before birth, leading to potential issues with feeding, speech, airway and other important functions.

When a baby with a cleft is still in the womb, there’s nothing expectant families need to do except enjoy those last days before their newest addition arrives. At the hospital, however, our cleft and craniofacial team members stay closely coordinated with you and the entire care team

“Once we have a prenatal diagnosis and we know that your baby may have a cleft, or if we suspect that it may be wide, we are prepared; we're very attuned to the multidisciplinary care in the NICUs NICUs — our neonatologists, feeding therapists, ENT colleagues and respiratory therapists all come together to make sure your baby will be as safe and healthy as possible,” says Dr. Sawh-Martinez, Chief of Pediatric Plastic Surgery at AdventHealth for Children and Medical Director of Craniomaxillofacial Surgery. “We help families anticipate what to expect, and support them every step of the way in those early days.”

“Families are understandably concerned about what their child will look like, and whether they’ll be able to eat and communicate,” explains certified physician assistant Ashley Nestle.

Our specialized teams work collaboratively and keep you informed about your baby’s care. In their first weeks of life, we get a better picture of what their unique treatment plan may look like.

“Families also have a lot of questions about the long run — will their child need additional care? We reinforce that they will be seen by our team into adulthood, and we will always be there for them,” adds certified physician assistant Luz Diaz.

Healing on the Way to Their First Birthday

Cleft repair is a journey, but one our teams are extremely prepared to guide you through, Dr. Sawh-Martinez explains.

“In the first year of life, for a child who has both a cleft lip and a cleft palate, you can usually expect two to three surgeries in that first year. If it's really wide, sometimes we'll do adhesion surgery around two-and-a-half to three months, followed by a definitive surgical repair, sometime around three to six months. Cleft palates we normally repair around 10 to 12 months of age.

We need to make sure that the babies are safe and that they can handle the surgery. We also want to make sure that any intervention we’re performing accounts for their growth and development. Speech starts to develop around a year old, so we like to do it around that time, if not a little bit before, to make sure that the muscles that help with speech are all the way healed before the baby starts really working on their words.”

Support Long After Surgery

Most children who experience cleft surgeries go on to heal and thrive. But as their bodies grow and change, shifts may occur that require extra care from our team.

“Babies’ faces, noses and lips change a ton in the first year of life, and definitely through childhood,” says Dr. Sawh-Martinez. “If you’re born with a large gap or facial difference, those scars, how they heal and how things grow and develop can be affected. Occasionally, if speech problems come along, kids may need some secondary surgeries to improve their palate. That can sometimes happen around the five-to-eight-year range if they need it.”

“Bone grafts or other procedures may be needed to help kids feel comfortable and confident as their adult teeth develop, between 8 and 12 years old. Later in adolescence, around 17 to 19, we often perform orthognathic or ‘jaw’ surgery to align the facial bones, and usually perform definitive rhinoplasties — nose surgeries — afterward, typically when our patients are college aged,” says Luz.

Along the way, our teams are committed to working closely to ensure the most coordinated and comprehensive experience for your child and family.

“We have ENT, speech therapy, our social workers, our neuropsychologists, our APPs and audiologists seeing our patients through those early and late teenage years together,” explains Dr. Sawh-Martinez. “After they're off to college, we usually see them every couple of years, or ‘as needed’, assuming everything’s going well.”

“Having someone who's familiar with your specific needs and your history is so valuable,” says Ashley. “We are honored to keep up with our patients and families as they grow and support them through additional treatments that are sometimes needed.”

What Multidisciplinary Cleft Care Means for Families

“The value and the gift of our multidisciplinary team is that all of us are looking at our patients and their families from all different perspectives,” says Dr. Sawh-Martinez. “We’re considering not only the surgery and the anatomy, but also the whole person. How are they doing in school? How are they doing with their friends? How are they doing at home? What are the social and emotional situations that our families are facing? And how can we add support at all levels, not only the surgery itself?”

The AdventHealth for Children team is passionate about ensuring each patient and their family feel seen and heard at every stage of treatment.

“We really have a very whole-person, whole-family approach to our care,” Dr. Sawh-Martinez adds. “Our families are going through a lot, especially at a time when a brand-new baby is there and they’re facing the prospect of surgery.”

“We know this treatment path can feel overwhelming and scary, so we want to make sure that we're taking care of all of the things that families might need,” says Ashley. “We have such compassion for their experience and are dedicated to their individual needs.”

“We really do treat every patient like we’d treat our own family, and we love to watch them grow and excel in their lives,” says Luz. “Even though their cleft might be repaired in infancy, it’s still a lifelong condition and we’ll be here to support you every step of the way.”

Whole-Person Care for Your Whole Life

A child’s cleft care affects the whole family. You and your family deserve care that nurtures you in body, mind and spirit — and a team that’s invested in your long-term well-being. The Pediatric Plastic Surgery and Craniofacial team at AdventHealth for Children is honored to be a part of your child’s health journey.

Learn more about our program here.