You might learn during a routine pregnancy ultrasound that your baby has a craniofacial anomaly, which is defined as an abnormality of the head and face such as: cleft lip, an opening in the lip; or cleft palate, which is an opening in the roof of the mouth. It’s reassuring to know that our highly experienced Cleft and Craniofacial team can provide life-changing surgical care and innovative treatment throughout your child’s growth and development.
Clefts of the lip and palate are among the most common major birth anomalies, which are conditions that are unusual or different at birth, previously called "birth defects." In fact, about one or two of every 1,000 babies born in the United States each year have a cleft lip or cleft palate. We know a cleft lip or palate diagnosis can be quite concerning. But both are treatable, and most children can have surgery to repair these anomalies within the first 12-18 months of life.
Our goal at Nemours is to help children with a congenital anomaly of the head and/or face look and function as normally as possible — and feel good about themselves as they grow. Our pediatric craniofacial team will give your child ongoing compassionate care and support.
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Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
Support Services & Helpful Information
- CaringBridge: visit this free site offering support and communication to help your family through your child's medical journey.
- Ronald McDonald House of Jacksonville: a safe, free, family-centered home away from home when your child is sick and needs to be hospitalized
- Visitor's Guide to Wolfson Children’s Hospital
It’s naturally very concerning to find out that your baby has a craniofacial anomaly (an irregular or abnormal growth of head and facial bones). But it’s important to realize that many craniofacial disorders are treatable, often immediately after birth.
Providing Medical and Surgical Expertise for Children with a Craniofacial Anomaly
At Nemours Children’s Specialty Care, Jacksonville, you can find the expertise and reassurance you need – we’re home to one of the foremost cleft and craniofacial anomaly programs in the area. Our Facial Anomalies & Skull Base Program is taking a critical role in the care of children with craniofacial disorders, offering leading-edge treatment and surgical procedures never before offered in North Florida.
Highlights of the Nemours Facial Anomalies & Skull Base Program
By offering the latest advancements in craniofacial plastic surgery, we’re able to provide life-changing treatment to children with craniofacial and maxillofacial anomalies (deformities or defects of the face, skull, jaw, or mouth). These
- Cleft lip and/or palate
- Goldenhar Syndrome: a condition associated with abnormalities of the head and the bones of spine, which can include differences of the eyes, ears, facial bones, and mouth
- Treacher-Collins Syndrome: an inherited condition that causes problems with the structure of the face
- Microtia: a deformity of the ear that’s present from birth and may affect hearing
- 22q.11.2 Deletion Syndrome (also called diGeorge or Velocardiofacial Syndrome): a disorder caused by deletion of a small piece of chromosome that can affect many parts of the body including the face, heart, and bones
- Tumors of the head, face, and jaws
Our Facial Anomalies & Skull Base Program is also gaining national prominence for the following procedures:
Pierre Robin Sequence (PRS), which causes the tongue to fall back into the throat, can make it difficult for babies to breathe and swallow. Our surgical team performs a state-of-art procedure that “distracts” or extends the jaw in stages, helping to grow new bone and expand the airway — without the need for breathing or feeding tubes.
Micrognathia is abnormal smallness of one or both jaws. When a baby’s jaw is too small, it can cause life-threatening airway blockage. Our pediatric craniofacial surgeon can reconstruct and extend the jaw so that your child can breathe and swallow without problems.
Craniosynostosis is when the bones of a baby’s skull fuse together before the brain has stopped growing. Our pediatric surgeon uses a new minimally invasive technique called endoscopic (using a thin, flexible viewing instrument) repair that creates small incisions (rather than the traditional ear-to-ear incision) to allow room for the brain to grow and shape the growth of the head. Smaller incisions also mean less scarring and a faster recovery.
We offer advanced treatment, unique in Northeast Florida, for children with vascular anomalies (blood vessels that have developed abnormally) such as hemangioma (a type of birthmark or growth composed of blood vessels) and lymphangioma (a malformation that involves the lymphatic, or body fluid, system).
Tumors that grow under, along, across, or within the skull base can lie close to, or even touch the brain, as well as important nerves—so these tumors must be removed with the utmost care. We offer comprehensive diagnosis and treatment of these complex problems, which can include trauma (injury) or congenital (from birth) and oncologic (cancerous) diseases of the skull base. Working closely with pediatric neurosurgeons at Wolfson Children’s Hospital, we provide an innovative and minimally invasive approach designed to remove the tumor and help speed your child’s recovery.
Traditionally, a child with a lesion (an abnormal growth or patch of skin) in or around the eye socket (orbital or periorbital) required a facial incision to remove the growth. Fortunately, today we can offer a minimally invasive approach that utilizes a small scalp incision hidden behind the hairline. Working with small cameras and endoscopic (using a thin, flexible viewing instrument) equipment, we can remove lesions and tumors without making any incisions on a child’s face. The result is little to no scarring and faster recovery. If your child has such a lesion, please contact us to learn more about the benefits of this state-of-the-art procedure.
Partnering With Parents
As a parent or guardian, you’re a crucial member of your child’s care team and we welcome your input and participation. We strongly believe in educating families and encourage your active involvement in the decision-making process. Over the course of this long-term partnership, we develop a close relationship with families like yours — sharing in the pride and joy of your child’s growth and accomplishments.
Getting Started: Developing a Treatment Plan for Your Child
At the first appointment after your baby is born, your child will be evaluated by our pediatric team, which may include the following specialists and health care professionals, all working together to give your child the best and most comprehensive care:
- pediatric craniofacial surgeon
- geneticist (Cleft lip and palate can be part of a genetic condition that can cause other symptoms, so we may suggest genetic testing as well.)
- otolaryngologist (ear, nose, and throat)
- speech-language pathologist
- feeding therapist
- social worker
What to Expect as Your Child Grows
A child’s care usually starts in early infancy and can last through adolescence and young adulthood. Craniofacial conditions don’t just affect how kids look on the outside. They also may cause problems with:
- feeding and speech
- the ears and hearing (due to fluid build-up in the middle ear)
- the teeth, jaws, and mouth
Some children may need additional surgeries at various ages, depending on the type and extent of the craniofacial anomaly and how it affects other parts of the body. Some children also may need specialized therapy to help with things like speech and feeding difficulties. Please know that our surgeons care about how your child looks on the outside and feels on the inside, and that we take pride in providing personal, compassionate care.
Cleft Lip and/or Cleft Palate Repair Timetable
Although every child is unique, surgical care for children with cleft lip and/or palate typically follows this approximate timetable:
- 3 months to 6 months: Cleft lip repair
- 9 months to 12 months: Cleft palate repair surgery
- 7 years to 11 years: Bone graft to repair gum line
Improving Your Child's Life and Self-Confidence
Children often have to deal with social and/or emotional challenges associated with having a craniofacial condition. We understand the impact this can have on a child’s confidence.
That’s why a large part of our program is devoted to helping kids feel better about themselves. You can rely on our team for support and guidance in helping your child develop a positive self-image that reflects the beauty of your child’s individuality.
Teaming up with Wolfson Children's Hospital and Your Child's Doctor
When your child’s treatment requires surgical or overnight hospital care, know that we’ll help make your family's experience as easy and stress-free as possible. A unique relationship with Wolfson Children’s Hospital in Jacksonville allows our Nemours pediatric craniofacial specialists to provide surgical consultation and care in their pediatric operating rooms and outpatient surgical suites.
During any procedure that requires anesthesia, rest assured that our Nemours pediatric anesthesiologists are right there to talk with you and to make decisions on the best types of anesthesia medicine to make sure your child is comfortable.
Our award-winning electronic medical record and digital photography also make it easy for us to share test results and treatment plans with your child’s primary care doctor, as well as with other Nemours specialists.