What is cleft lip and palate?
Cleft lip and palate is one of the most common birth defects, usually affecting 1 to 2 babies per 1000 births.
Cleft lip is a gap or separation in the upper lip. Some cleft lips are only a small gap in the upper lip, while others are a complete separation of the lip that extends to the bottom of the nose. A cleft lip can be unilateral (only on one side) or bilateral (both sides are cleft). Cleft lip is more common than cleft palate.
Cleft palate is an opening or split in the roof of the mouth. It can affect the hard palate (the bony part in the front of the roof of the mouth) and/or the soft palate (the soft part in the back of the roof of the mouth). A complete cleft palate means that there is no palate. An incomplete cleft palate means that there is only part of the palate missing. Cleft palate occurs less often than cleft lip.
Cleft lip and cleft palate can both be isolated, meaning that a child can be born with only a cleft lip or only a cleft palate. About 70% of clefts are isolated.
Often, a cleft lip and palate also includes the upper jaw and/or upper gum line. Cleft lip and palate only affects the upper part of the mouth, not the lower part.
What causes cleft lip and palate?
When the lip and palate are formed, tissue from both sides meets in the middle and fuses. Clefting occurs when there isn’t enough tissue to fuse the two sides of the structure, fusion doesn’t take place at all, or the tissue doesn’t fuse correctly. These structures are formed very early on in pregnancy – about 5 to 8 weeks after conception. Usually, an ultrasound can identify a cleft lip and palate well before the baby is born.
The cause of this birth defect is unknown. Scientists believe it is a combination of genetic and environmental factors. Sometimes, cleft lip and palate can be part of another condition.
Certain medications are believed to cause cleft lip and palate if taken during pregnancy (Accutane, certain seizure medications, etc.). It is also thought that a folic acid deficiency in the mother may contribute to this birth defect.
There is no known way to prevent cleft lip and palate.
How can a cleft lip and/or cleft palate be fixed?
Cleft lip and palate are both repaired surgically. Cleft lip repair is usually done by about 3 months, while cleft palate repair is done sometime between 6 and 18 months. Depending on the severity of the cleft, a child may require other surgeries to repair the jaw and/or gum line. This usually requires bone grafting and is often done around the age of 6 to 8, depending on when the child’s adult teeth begin to come in. Many children with cleft lip and palate also need extensive dental work that may include braces and implants.
The number of surgeries a child requires will depend on the severity of the cleft and the plan decided upon by the surgeon or oral cleft team.
How else might a cleft lip and palate affect my child?
Cleft lip and palate can affect many areas of a child’s life.
Feeding: Often, babies born with a cleft lip and palate require the use of a special bottle since they cannot properly suck due to the cleft in the roof of the mouth. These bottles usually have a longer nipple which makes it easier for the child to eat. Other feeding issues may include gagging, choking, and milk coming out through the nose while eating. Children born with an isolated cleft lip usually do not have problems feeding.
Hearing: Hearing problems can occur due to the increase in number of ear infections due to a cleft palate. A cleft palate can cause fluid build-up in the middle ear, which can then cause ear infections. If the ear infections are properly treated, any hearing loss the child may have is usually corrected. It is not uncommon for children with clefts to require multiple sets of ear tubes. If hearing loss is not properly addressed, it can affect speech development.
Speech: As mentioned above, delays in speech development can sometimes occur in children with a cleft lip and palate. This is usually the result of hearing issues that have not been addressed. Children with a cleft palate can sometimes have speech that sounds more nasal, or they may have trouble producing certain sounds. Usually, after cleft palate repair, any gaps in speech development can be corrected – sometimes through normal development and other times with the help of a speech therapist.
Ear Infections: As discussed under hearing, it is not uncommon for children with cleft lip and palate to have frequent ear infections. If not properly treated, these infections could cause some hearing loss. However, an ENT (ear, nose, and throat doctor) may decide to put in ear tubes. Ear tubes help to drain the fluid from the middle ear, thereby cutting down on ear infections and the potential for hearing loss.
Dental Problems: Children with a cleft lip and palate that extends to the upper gum line usually have dental problems. They may need bone grafting to fill in parts of the gum line that are missing. Some baby teeth and adult teeth may also be missing depending on the severity of the cleft. All of the problems can be corrected.
What kind of care will my child need?
You can expect that your child will need to see a variety of specialists depending on the type and severity of the cleft. These may include:
- Pediatric plastic surgeon
- Speech Therapist
- ENT (ear, nose, and throat doctor)
- Audiologist
- Oral surgeon
- Orthopedic surgeon (if bone grafting is required)
- Social worker
- Nurse coordinator
- Orthodontist
- Genetic counselor
Many hospitals have an oral cleft clinic. In the oral cleft clinic, your child will meet with many specialists from the list above (usually once per year). All of the specialists will evaluate the growth of your child. Then, the oral cleft team meets to come up with a treatment plan that best suits your child’s needs.
I just found out my child has a cleft. What should I do?
While discovering that your child has a birth defect can be scary and overwhelming at first, there are many resources to help you. The good news is that anything that is wrong with your child can be repaired.
Suggestions:
- Find a pediatric plastic surgeon. Ask for referrals from doctors or people you may know who have a child with a cleft. You may want to visit a couple of different doctors and select the one you are most comfortable with. Most surgeons will meet with families before the child is even born.
- Discuss any possible feeding issues with your doctor or surgeon. It is best to be prepared for any feeding issues that may arise after your child is born.
- Find an oral cleft clinic. Ask your surgeon, pediatrician, or doctor for recommendations on oral cleft clinics. Usually, your surgeon will be part of an oral cleft clinic and will refer you to the other specialists above.
- If your child has issues (ear infections, etc.) before your surgeon gives you a referral to a specialist, don’t be afraid to set up the appointments on your own. It is better that your child get immediate care for any issues that may arise. If you’re concerned about hearing, speech, or ear infections, don’t wait for your surgeon to refer you to a specialist. Address issues as they arise in a timely manner.
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