Conditions and Treatments, Cleft and Craniofacial Program at Johns Hopkins All Children's
The cleft and craniofacial team at Johns Hopkins All Children’s provides a comprehensive, team approach to treating children with cleft lip or palate.
What is a cleft lip and/or cleft palate?
Cleft lip and palate is the most common birth defect in the United States. It results from a failure of the bones and tissues that form the nose, lip, and roof of the mouth to fuse during development. Children may be born with clefts that affect their lip, palate, or both. Each child’s treatment is tailored to their specific type of cleft to give them the best appearance and functional outcome.
Why choose Johns Hopkins All Children’s
Cleft lip or palate can impact a child in several ways, causing feeding issues, ear and hearing issues, speech and language delay, and dental problems. Our team is comprised of experts in these areas who work together to provide an individualized treatment plan for each child.
The team includes pediatric plastic and reconstructive surgeons; pediatric ear, nose, and throat specialists; audiologists; speech-language and feeding therapists; and pediatric dentistry and orthodontics specialists. Learn more about the cleft and craniofacial team.
The Johns Hopkins All Children’s Hospital Cleft and Craniofacial Program is also approved as a Cleft Palate Team and Craniofacial Team by the Commission on Approval of Teams, which ensures cleft and craniofacial teams meet the Standards for Cleft Palate and Craniofacial Teams as set by the American Cleft Palate-Craniofacial Association and Cleft Palate Foundation.
Watch and be inspired by Harper's story:
When Melissa and Creighton were looking for care for their baby who would be born with cleft lip — a condition Melissa had also been treated for as a child — they found the expert, compassionate team they were seeking at Johns Hopkins All Children’s. Learn how the cleft and craniofacial team helps patients like baby Harper.
What causes cleft lip and palate?
Researchers are still learning more about the causes of cleft lip and palate, but multiple factors contribute to its development. Some patients carry a genetic factor or have a syndrome that places them at higher risk for the condition, but the majority of cleft patients do not have one of these conditions. These cases likely result from a unique interaction between the patient’s genes and the environment.
Families who previously had a family member with a cleft are at a very small increased risk of having another baby with a cleft. Our cleft team will perform a thorough evaluation of your child and family to give you more helpful information about this condition.
What are the symptoms of cleft lip and palate?
In addition to the obvious facial differences, other issues related to the cleft may require treatment or education from our team.
Because the lip and/or roof of the mouth are divided, infants often have difficulty sucking effectively. It is not uncommon for infants with clefts to have difficulty or to be unable to breast feed. Typically infants with clefts require specialized bottles to feed effectively. Our feeding specialists will teach you how to feed your baby so they can grow.
Ear and hearing issues
Ear infections and fluid accumulation in the ears is common in cleft patients. This can cause long lasting hearing loss and difficulty learning to speak. To prevent this, most patients with cleft palates require ear tubes. We have audiology and ENT specialists on our team to address these needs.
Speech and language delay
Due to the cleft, the muscles of the palate do not always function properly. This may prevent your child from making specific sounds needed for normal speech. This is often correctable with therapy, but occasionally requires a surgical procedure to correct the problem. Our speech therapists and surgeons work closely to identify patients who would benefit from these treatments.
Dental anomalies are common in cleft patients. It is common for teeth to be missing, extra, or abnormal. Cleft patients are at increased risk for cavities and most benefit from braces. We have pediatric dentists and orthodontists on our team to assist you with getting your child the care they need.
How are patients with cleft lip and palate assessed?
Treatment of cleft lip and palate requires a team of specialists. We have a well-established team that meets regularly to provide care for these patients. Cleft patients are usually seen in one of these “team” clinics every 1-2 years to coordinate all phases of their care from birth until they graduate to adulthood.
During a team visit, you will see your plastic surgeon, an ENT specialist, a pediatrician, an audiologist, a speech/feeding expert, a pediatric dentist, an orthodontist, and our social worker. At different phases of your child’s development they may need more focused treatment from one of these specialties, and they will be seen more frequently by the appropriate expert.
How are cleft lip and palate treated/repaired?
Cleft lip and cleft palate are both repaired with a surgical procedure performed by your child's plastic surgeon. Cleft lip surgery is usually performed first, except in rare cases when children are adopted or present to the clinic at an older age.
Cleft lip and cleft palate surgery are both performed at Johns Hopkins All Children's Hospital with our team of dedicated pediatric anesthesiologists. Most patients remain in the hospital for 1-2 days.
When is cleft lip/palate surgery usually done?
A cleft lip repair is performed between 3 ½ - 6 months of age. This operation will correct the deformity of the lip and nose caused by the cleft. The timing of surgery depends on the severity of the cleft and the health of your baby. Our experts want to ensure your infant is growing and healthy before surgery.
Cleft palate surgery is usually performed when a child is older. Surgery is often before the child’s first birthday, but this may vary depending on other medical conditions. The goal is to fix the palate and its muscles so your child can develop normal speech.
Preparing your child for surgery
In children with more severe clefts, work may be necessary to prepare them for the best outcome. Often this involves the use of a modified Latham device that will decrease the width of the cleft and allow the surgeon to achieve the best result.
If your child is a candidate for the Latham device, we will take a molded impression of his or her mouth, create a device specifically for your child, and place the device in the operating room. Our plastic surgeon and orthodontists will teach you to care for this device before surgery. A secondary lip or nose surgery may be needed as your child grows, and most cleft patients benefit from a final nose surgery, or rhinoplasty, after they are done growing.
What to expect following cleft lip surgery
Your child will likely be irritable following surgery. They will be prescribed medications to help with this. Your child may have to wear padded arm restraints to prevent them from placing their hands in their mouth and injuring their surgical site.
Your child may have dissolving stitches or stitches that will be removed 5-7 days after surgery. Your surgeon will discuss this with you. It is normal to have swelling, bruising, and blood around the incisions. The lip scar will gradually fade with time, but will never completely disappear.
You will be given instructions on feeding your child after surgery. During surgery and afterward, your child will have an intravenous (IV) catheter to provide them fluids until they are able to drink sufficient liquids by mouth. Your child will likely require pain medications after surgery. After 2-3 days your child will feel more comfortable and should only require non-aspirin pain medications, which can be discontinued after a few additional days.
What to expect following cleft palate surgery
Cleft palate surgery is more involved than lip surgery and often patients have greater discomfort afterward. As a result, patients do not eat or drink as usual for 2-3 days after surgery. Your child will have an intravenous (IV) catheter to allow us to give them pain medications and fluids until they are drinking sufficient liquids.
Your child will have stitches in the palate that will dissolve on their own. Your child may have to wear padded arm restraints to prevent them from placing their hands in their mouth and injuring their surgical site.
Your child may have a stitch in their tongue or a tube in their nose after surgery. This is in case they develop a swollen tongue after surgery. If their swelling is minimal, this will be removed the day after surgery. There may be bloody drainage from the nose and mouth after surgery. This will decrease in 1-2 days. Many infants have nasal congestion after surgery. Signs of this include snorting, mouth breathing, and decreased appetite.
A small amount of water should be offered after every bottle or meal to cleanse the incision. You should rinse the incision gently several times a day to keep it clean from food or debris. Your child may stay in the hospital for 1-3 days depending on their feeding after surgery. They will be discharged home with a prescription for pain medication.
Your plastic surgeon may want your child to eat a soft diet for up to 4 weeks after surgery. Breast milk and formula are fine to drink after surgery. For older children, appropriate foods include baby foods, popsicles, yogurt, mashed potatoes, gelatin, and other foods of similar consistencies.
Your child can walk or play calmly after surgery. He or she should not engage in rough play or contact sports. They should not place toys or other objects in their mouth. Your plastic surgeon will inform you when it is okay to return to their previous activities.
We know that you want the best possible care for your child. Our team is here to assist you with your questions. Please, contact us and a member of our team will contact you.