Cleft lip and cleft palate
The shape and structure of a baby’s mouth and face begin to materialize in the early weeks of pregnancy:
- Around the fifth to sixth week, the two sides of the upper lip fuse together.
- Between the eighth and twelfth week, the roof of the mouth is formed.
However, when something goes wrong in one or both of these processes, the result is often a cleft lip and/or a cleft palate.
- A cleft lip is a split, or cleft, in the skin of the upper lip. This defect can range in size from a tiny, almost imperceptible hole to a very large opening that includes the top gum and top jaw.
- A cleft palate is an opening in the roof of the mouth. This opening can go through the bony hard palate around the top row of teeth; through the fleshy soft palate at the back of the mouth; or through both parts.
Many children have both a cleft lip and a cleft palate. If the defect only occurs on one side, it is called unilateral. If it involves both sides, the cleft lip/cleft palate is bilateral.
Cleft lip/cleft palate can present a number of obstacles for a child, including possible:
- feeding issues
- dental and orthodontic problems
- speech and language difficulties
- hearing impairment
- social and self-esteem challenges
Because cleft lip/cleft palate can vary widely in severity from child to child, treatment options also encompass a broad spectrum. A baby with a very minor, unilateral cleft lip, for example, might only need one procedure, while an infant with an extensive defect that runs through both sides of his palate may require many different interventions throughout his childhood.
You can rest assured that—regardless of the extent of your child’s cleft lip/cleft palate—there is plenty of cause for hope: These defects are very manageable. In fact, thanks to recent advances in diagnostics and care, treatment can often start right at birth.
Here at Children’s Hospital Boston, our multidisciplinary Cleft Lip and Palate Program is designed to meet the needs of children of all ages and with all variations of cleft lip/cleft palate. No matter your child’s specific circumstances, we are ready to help him—and to include you and your family in the treatment process at every step of the way.
|What are the types of cleft lip?|
|View this helpful diagram to learn more.|
What causes cleft lip/cleft palate?
We know that cleft lip/cleft palate are congenital defects—always present at birth—and that they involve a disruption to the formation of the fetus’s top lip and/or roof of the mouth. However, no one knows exactly why these disruptions take place.
It is believed that cleft lip/cleft palate may be genetic conditions (resulting from an error in the genes). Some children with cleft lip/cleft palate have other family members with the defect, but in most cases, there is no evidence of any family history.
Scientists believe that some instances of cleft lip/cleft palate may happen because of something that affected the mother during pregnancy, including:
- taking certain medications
- using tobacco or alcohol
- vitamin deficiency
- viral illness
Finally, in very rare cases, a child’s cleft lip/cleft palate may be related to the connective tissue disorder Stickler syndrome.
Signs and symptoms
What are the symptoms of cleft lip/cleft palate?
Nearly all babies with cleft lip/cleft palate are diagnosed at birth (or even before, through prenatal ultrasound) because the defects are readily apparent.
In rare cases, a child may have a cleft palate that only involves her soft palate (the fleshy tissue at the back of her mouth) and isn’t evident on an initial visual exam. The first sign of a problem in these babies is usually difficulty feeding (an inability to latch on to the breast or bottle nipple, or to use consistent suction while nursing).
Q: Do children with a cleft lip always have a cleft palate (or vice versa)?
A: No. A child can be born with just a cleft lip, just a cleft palate or a cleft lip and cleft palate together.
Q: Can cleft lip/cleft palate be prevented?
A: At the moment, there is no known way to prevent cleft lip/cleft palate; in order to understand how to prevent these defects, we would first need to understand how and why they occur. Researchers are hard at work on uncovering new insights, but have found no proven cause as of yet.
Some theories suggest that certain steps might contribute to preventing cleft lip/cleft palate, namely:
- undergoing genetic testing and genetic counseling
- avoiding alcohol and tobacco consumption during pregnancy
- increasing the intake of folic acid during pregnancy
Q: Are all cleft lips the same?
A: No; in fact, there are several types of cleft lip. (You can view this illustration as a reference.)
The lip, nose and palate can all be involved to varying degrees. The major types of cleft lip are:
- unilateral (occurring to either the left or right of the midline of the face and mouth; for reasons we don’t fully understand, the left side is more commonly affected)
- bilateral (occurring on both the left and right sides)
And there are three subtypes:
- incomplete (only partial fusion of the two sides of the top lip)
- complete (total absence of any fusion)
- asymmetrical (complete on one side and incomplete on the other)
Q: Can my child’s cleft lip be repaired?
A: Yes. Your child’s cleft lip can be closed with a surgical procedure. After the operation, your child’s mouth and nose will be near normal in appearance and should function normally.
Q: When will my child’s cleft lip be repaired?
A: Most cleft lips are closed before 6 months of age. If your child also has a cleft palate, that will be repaired in a separate operation. Your plastic surgeon will talk to you about the best surgical for your child.
Q: Are all cleft palates the same?
A: No. The palate is composed of two parts, a fleshy, muscular part (soft palate) and a bony part (hard palate). The soft and hard palate can be involved to varying degrees.
Q: Can my child’s cleft palate be repaired?
A: Yes. The opening in the hard and/or soft palate is usually closed in one operation, though your child may need more than one procedure depending on his particular circumstances. Your treatment team will outline specific recommendations.
Q: Are there genetic tests to screen for cleft lip/cleft palate?
A: Unfortunately, no. At this time, there are no available tests that can detect the genetic changes responsible for cleft lip/cleft palate.
Q: If my child has cleft lip/cleft palate, what are the chances that my future children will have the defect, too?
A: The chance of having more than one child with a cleft lip and/or cleft palate is different for each family. In general, if there is one affected person in the family with a cleft, the likelihood of having a child with a cleft lip and/or palate is 2 to 5 percent. If there is a second affected person in the family (either another sibling or a parent), the chance of future children having a cleft lip increases to 10 to 14 percent, and the risk of a future child having an isolated cleft palate rises to 8 percent.
Here at Children’s, a geneticist on your child’s cleft treatment team can provide detailed information about your family’s particular situation.
Q: Can I breastfeed my baby?
A: If your infant has a cleft lip only, attachment to the breast is fine with some adaptation to cover the cleft. If breastfeeding is not an option, then any type of silicone nipple and bottle may be used. Learn more in our Treatment and Care section.
Q: Will my child have difficulty hearing?
A: Not necessarily, but it is possible.Children born with a cleft palate often have temporary hearing loss because of fluid in the middle ear and recurring ear infections. This hearing loss may last for a short time, or it may persist for a number of months.
Speech and language development is influenced by a child’s ability to hear well. Your child will undergo her first hearing test early in life, and will be tested again prior to the operation to repair her cleft palate. Her age and developmental level will determine which hearing test method will be used. Learn more in our Treatment and Care section.
Q: Will my child experience difficulty speaking?
A: Possibly. Some children with a cleft palate have speech and language delays. These may be related to the temporary hearing loss associated with the cleft palate and middle ear fluid.
Some children exhibit difficulty with speech if their palate is not effectively closing off the nose from the mouth while they are speaking. However, the good news is that most will acquire speech and language skills at a normal pace after the palate is closed and middle ear tubes are placed for drainage. Learn more in our Treatment and Care section.
Q: Will my child’s cleft lip/cleft palate affect his dental health?
A: If your child has a cleft lip and/or cleft palate, he may be more susceptible to developing cavities. Learn more in our Treatment and Care section.
Q: Will my child need orthodontic therapy?
A: It’s likely. Since the bite is almost always affected in some way, most children with a cleft palate require one or more phases of orthodontic treatment (usually braces). Learn more in our Treatment and Care section.
“Helping Children with Medical Experiences:
A Practical Parent Guide”
|Read and download this free guide, published by Children’s Department of Psychiatry.|
Questions to ask your doctor
You and your family play an essential role in your child’s treatment for cleft lip/cleft palate. It’s important that you share your own observations and ideas, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.
You’ve probably thought of many questions to ask about your child’s diagnosis and treatment plan. It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your child’s appointment. That way, you will have all of your questions in front of you when you meet with your child’s treating clinician and can make notes to take home with you.
Initial questions to ask your doctor might include:
- How did you arrive at this diagnosis?
- Does my child have a cleft lip, cleft palate or both?
- How severe/involved is the defect?
- Does my child require further testing or procedures?
- Do I need to take special steps to feed my child?
- What surgical procedure(s) do you recommend, and when? What will they entail?
- Will the cleft lip/cleft palate be a factor as my child reaches school age? If so, what steps do I need to take?
- How do you anticipate my child’s hearing and speech to be affected?
- What about his dental health?
- Does he need braces or other orthodontic treatment?
- How should I talk about my child’s condition with him as he gets older?
- How should I explain my child’s condition to others?
What other resources can you point me to for more information?
|One mother's story|
|For Meera Oliva, learning that her son, Elan, would be born with a cleft lip and palate was devastating. Read more.|
Related Conditions and Treatments:
- Advanced Fetal Care Center
- Cleft Lip and Palate Program
- Dental Care for Children with Special Health Care Needs
- General Otolaryngology Program
- Oral & Maxillofacial Surgery
- Otolaryngology and Communication Enhancement
- Pediatric Dentistry
- Plastic and Oral Surgery
- Speech-Language Pathology Program