CLEFT LIP/CLEFT PALATE

Definition: A birth defect consisting of a cleft deformity of the lip and/or the palate.

Author’s Comment: Fortunately, the medical repair of this type of birth defect, which can appear so intimidating at birth, is amazingly good and far superior to the cosmetic corrections of the past.

1. What caused this condition to occur in my child?

The condition is due to multiple factors. Cleft lip with or without a cleft palate can be an inherited condition, but more commonly is the result of a developmental break in the fusion of the facial segments. Exposure to heavy metals, deficiencies of vitamin B12 and folate, and environmental factors can all play a part in causing these deformities. The condition can be associated with more complex facial syndromes but is less common than singular presentation alone.

2. Did something I did or did not do during my pregnancy contribute to the cause?

Expectant mothers who do not take prenatal vitamins and do not receive prenatal care are associated with a higher increase in compli- cations in the newborn period as well as structural deformities at birth (congenital anomalies). However, because cleft lip/cleft palate is such a complex anomaly, it is very difficult to pinpoint the cause or directly relate causation to something the mother did or did not do.

3. When do we need to see a plastic surgeon that specializes in the repair of this type of problem (craniofacial surgeon)? Will the surgeon show me pictures of children with this deformity who have had the repair procedure(s)?

When the diagnosis is made, often based on a prenatal ultrasound, the parents should seek the advice and consultation of a craniofacial/cleft surgeon. This allows the family to be prepared for the delivery and to get most of their questions answered prior to the hustle and bustle of the postnatal period.

The surgeon should see the infant at two weeks’ discharge from the hospital for a complete examination to evaluate the presence of other problems. A surgeon should be able to show before and after pictures of surgeries he or she has performed. Additionally, many practices can get you in touch with parents of other children with cleft lip and/or palate deformities so that you can get the information you need on a parent-to-parent basis.

4. What kind of surgery or reconstruction procedure(s) will be needed to repair this deformity, and when will they occur?

Children with cleft lip and/or palate deformities often undergo a series of operations within the first two years of life. This usually first includes a lip repair (possibly with a nasal correction at the same time) at around three months of age. The surgery can be delayed if the child is born prematurely or is of slight stature. The child should be at least ten weeks old, weigh 10 pounds, and have a hemoglobin (measurement of the blood count) level of 10 before undergoing this surgery.

The palate is then repaired between six to twelve months of age depending on the surgeon. Many surgeons repair the palate in one stage at or near twelve months of age to promote good speech.

Each surgeon should have a protocol that works for him or her and is specific to each center. It is recommended that you seek a surgeon associated with a respected and affiliated center so that the child can receive complete care from team of specialists, including a speech pathologist, pediatric dentist, geneticist, pediatric anesthesiologist, and pediatric ear, nose, and throat specialist. These people will be closely integrated into the child’s care.

After the first year, there can be additional operations depending on the severity of the cleft and the resulting facial changes during growth. Many issues present themselves over time as the child grows. The face often becomes asymmetric and deficient on the cleft side. Operations can include a bone graft into the cleft at the level of the gum line, a nasal procedure to improve breathing and straighten the nose, and even jaw surgery to improve the bite and facial balance. Further surgeries are performed on an individual basis. The goal is to keep the child’s facial features as symmetric and functional as possible throughout growth.

5. What are the dangers of the surgery?

Surgery on children carries the same or similar dangers as surgery on adults, such as bleeding, infection, scarring, and persistence of the asymmetries. Other issues include persistent holes in the palate (fistulas) and palatal dysfunction that may lead to speech impedi- ments, most specifically a nasal voice or inadequate functioning of the soft palate and the upper part of the throat (velopharyngeal insufficiency).

Many dangers are unpredictable because they depend on the age of the child and the level of the original deformity. As with other condi- tions, life-threatening risks are associated with any surgery and are closely related to anesthesia. Therefore, it is important to have an anesthesiologist specially trained in the care of children to do the surgical cases.

6. How will the deformity impact my child’s functioning, and what can be done to overcome it?

In children with cleft lip and palate deformities, the scars are often visible. The impact of this deformity is hard to address. Of course, the child will be aware of his or her differences from other children, and this awareness usually begins between the ages of two and four years old. I tell all of my patients that we all have scars of some form. Addressing the scars directly helps the child deal with these differ- ences better. Consistent parent and family support, open dialogue as the child gets older, and the child’s inclusion in surgical and care deci- sions as he or she is able all help diminish the negative effects of the congenital deformity.

7. Is there a greater likelihood that my child will have more learning differences or speech problems than other children?

Children with cleft lip (but not cleft palate) have no greater incidence of speech or learning differences than other children. However, when the palate is involved, the risk of speech issues significantly increases. These children should be followed yearly, if not more frequently, for speech issues throughout their growth.

In 10 percent to 15 percent of cases, children with a cleft palate may require further surgery to improve their speech. As far as learning differences go, it is hard to tell the likelihood that they will occur, as there is not much data available in this area. Since children with cleft palate also have a higher incidence of hearing problems, it is these hearing issues that can lead to learning difficulties because the child cannot always hear what is going on in the classroom. Once fixed, these issues resolve.

8. If we have future children, what are the chances that they will be born with this same type of disorder?

The incidence of having a child with a cleft lip/palate deformity is about one in seven hundred. If either parent or a first-degree family member has the deformity, the risk increases. If you have one child with the deformity, the risk of subsequent children having a clefting deformity also increases. Because of these increased risks, genetic counseling is recommended prior to having further children so parents can have a complete understanding of these risks.

9. What kind of follow-up will be needed for this condition?

Children with cleft lip and palate deformities require consistent follow-up with the cleft palate team throughout their growth, which is usually until their high school graduation. Because there are changes during growth, the final effects of the deformity are not seen until growth is complete. Different stages of a child’s development require different surgical, orthodontic, and therapeutic interventions.

Each member of the team may need to see the child independently, but the entire team should follow up yearly. It is key that the child is cared for by a team of physicians and health care specialists who are trained specifically in the care of the cleft patient, as this regimen of close follow-up is mandatory. 

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