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.
For Appointments: (302) 651-4200
Hours: Monday–Friday: 8 a.m. to 5 p.m.
For Information: (302) 651-4310
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- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
- Patient Presents Without Legal Guardian (PDF)
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Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
Max was born with a cleft lip and a cleft palate and needed two surgeries before nine months old. "Having the best care team is the most important part of the journey," explains Kerry, Max's mom.
The Cleft and Craniofacial team at Nemours/Alfred I. duPont Hospital for Children has more than 60 years of experience and expertise in caring for children with conditions affecting the head and face, such as cleft lip and/or cleft palate.
Our team from across many different specialties is led by Dr. Joseph Napoli, Division Chief of Plastic, Maxillofacial, and Craniofacial Surgery. An advanced practice nurse (APN) serves as your child’s personal care coordinator, ensuring that your family receives individualized attention and that you have someone to call whenever you have questions. Our APN also will help organize your child’s visits.
As a parent or guardian, you’re a crucial member of your child’s care team and we welcome and encourage your input and participation. 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.
We treat children with cleft lip and palate and other craniofacial and maxillofacial anomalies (deformities or defects of the face, head, jaw, or mouth), including:
- 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
- Pierre Robin Sequence (PRS): a condition often characterized by an abnormally small lower jaw formation that causes the tongue to fall back into the throat
- Treacher-Collins Syndrome: an inherited condition that causes problems with the structure of the face
- 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
- Craniosynostosis: when the bones of the skull fuse together before the brain has stopped growing
- Microtia: a deformity of the ear that’s present from birth and may
- Apert Syndrome: a genetic disorder that affects the bones of the skull and face
- Crouzon Syndrome: a genetic disorder affecting the bones of the skull and face
- Vascular Anomalies: abnormalities of the blood vessels
- Tumors of the head, face, and jaws
At the first appointment after your baby is born, your child will be evaluated by individual specialists on our team. This gives you the opportunity to meet one-on-one with each of the various providers who may be caring for your child.
Our team includes the following specialists and health care professionals, all working together to give your child the best, most comprehensive care:
- plastic surgeon
- oral and maxillofacial surgeon
- geneticist and genetic counselor (Cleft lip and palate can be part of a genetic condition that can cause other symptoms, so we may suggest genetic testing as well.)
- general pediatrician
- advanced practice nurse coordinator
- otolaryngologist (ear, nose, and throat)
- speech-language pathologist and feeding therapist
- social worker
After your first appointment, your care team will meet as a group and agree upon treatment plan recommendations for your child.
For kids with cleft lip and/or cleft palate, their care usually starts in early infancy and can last through adolescence and young adulthood. But craniofacial conditions don’t just affect how children look on the outside – they also may cause problems with:
- feeding and speech (so some children may need specialized therapy
- the ears and hearing (due to fluid build-up in the middle ear)
- the teeth, jaws, and mouth
Please know that our surgeons care about how your child looks on the outside and feels on the inside — and we take pride in providing personal, compassionate care.
In addition to cleft lip and cleft palate repair, some children may need additional surgeries at various ages, depending on the type and extent of the cleft and how it affects other parts of the body. Fortunately, we can offer you and your child just such expertise.
One example of this is a mandibular (jaw) distraction procedure (also known as distraction osteogenesis). This procedure is performed for children whose jaws are so short that their tongues block their airways, which makes it difficult to breathe. In jaw distraction surgery, the bone of the jaw is lengthened using small, extendable braces called distractors. These are gradually extended over a period of a few weeks, allowing the bone of the jaw to grow and fill in the gap. This results in enough space for the tongue and allows normal airway breathing. When the bone has healed, the distractors are removed.
This remarkable procedure eliminates the need for more drastic surgical procedures such as tracheotomies and the associated risks, complications, and discomfort.
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
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 your 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, which includes psychologists and social workers, for support and guidance in helping your child develop a positive self-image that reflects the beauty of your child’s individuality.
Through the Nemours Partners for Perinatal Management program, we work with expectant parents and their doctors to help diagnose congenital conditions and develop a plan of care for after your baby is born.
We’ll partner with you and your family throughout your child’s growth and development. Throughout your family’s journey, you can count on us to answer your questions, offer reassurance and hope, and deliver the best life-changing care.
Along with expert cleft lip and cleft palate care, one of the things parents appreciate most is our location at Nemours/Alfred I. duPont Hospital for Children: a beautiful park-like setting of huge oaks and inviting green lawns.
You'll also find:
- free parking
- kid-friendly waiting areas
- little red wagons (available for escorting your young children)
- gift shop
- café and cafeteria
- on-site pharmacy
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.