Management and surgical treatment of the cleft lip and palate: Frequently asked questions

Cleft lip and palate affects about one in 1000 born in North America and requires a combination of people's expertise to manage medical, surgical and dental challenges that are required.

Can anything be done to prevent a child being born with a cleft lip or palate or at least reduce chances?

So far in the year 2012, there is no guaranteed way to prevent a child from being born with a cleft lip or palate. There are several ways to reduce the chances of having a child born with cleft lip or palate. First is to have as healthy a pregnancy as possible, including by not drinking alcohol, not smoking and taking prenatal vitamins that contain folic acid. Although there are no studies showing exact numbers as to what these habits will do in reducing the number of children with clefts, there are good studies that show that these are some of the things that can lower the risk.

What can be done for the child's speech, from the beginning of infancy until school?

Speech problems in patients with cleft palate are complex and individual. Some of the speech problems can be solved with speech therapy alone and some require a combination of speech therapy and surgery. Generally speaking, a team that includes both a speech therapist and cleft surgeon working together can best diagnose these problems.

What causes cleft palates?

Cleft lips and palates are classified as multifactorial conditions. This means that there are genetic components and environmental factors, which cause patients to be born with cleft palate. The genetic factors apparently can be at least somewhat modified by choices that mothers make during their pregnancy. What actually happens is that the areas of the roof of the mouth do not fuse together during development. This can happen on one side or on both sides and may be a complete opening in the mouth.

Does everyone with a cleft palate have to have surgery? What if they don't?

Not everyone with cleft palate has to have surgery from the standpoint of continued life. However, without some sort of management, speech will usually not develop normally. The management that can be used is either to place some sort of obturator in the cleft or to close the cleft with available tissue of the roof of the mouth. Most people have surgery to use the available tissue because there are a number of challenges in using the obturator in growing patients. The patients that live in parts of the world where surgery is not available have been noted to develop the ability to eat with the presence of a cleft palate. However, they do not develop normal speech without some type of repair.

With a bilateral cleft lip and palate, when would you do the surgery to repair the palate?

The timing of surgery for palate repair is somewhat variable. It depends on health, size and weight of the patient and the width of the cleft. Generally speaking, if it is possible, most surgeons will try to close the cleft closed before the patient begins speech in earnest.

What kind of follow up is needed after surgery?

Generally speaking, after surgery patients return to see their surgeons at an appointment several weeks after surgery to make sure that the surgical area has healed properly. After that has been established, our team usually follows patients at six months intervals until they are age five so that their speech development can be closely followed. After the age of five, most patients are followed at a yearly interval as their growth and development continues.

Is it difficult for children to eat and drink with a cleft palate?

If a child only has a cleft lip or palate (that is to say there is nothing else wrong other than an isolated cleft lip or palate) then they should be able to eat and drink and they should stay at an appropriate place on their growth and development curve. Special bottles and nipples are often needed for babies with cleft palates. If their growth and weight start to fall off of their established pattern on the growth and development curve, then investigation needs to be done to find out why this is happening rather than just assuming it is occurring because of the cleft lip or palate.

How do children with cleft lip and palate deal with teasing at school?

Most of the time, children with facial differences won't have a lot of psychological reaction to questions about their scars or differences in their appearance until they are roughly age six. After this point, there may be more feelings attached to questions about the difference in their appearance and many times it is necessary for the parents to educate students and teachers at school as to exactly what a cleft palate is. There are studies in the medical literature that show that children with cleft lip or palate grow up essentially psychologically normal. There are also studies that show that children with cleft lip or palate have more problems psychologically than their peers who do not have this condition. At our center, we have talked to a number of patients who are in their 40s and older and have had the opportunity to look back over their lives to see what impact having cleft had to them. One consistent factor in the patients who were well adjusted was that they had extremely supportive families and felt that they had a safe and comfortable place to talk about their condition and get their questions answered. An important part of the overall care and treatment of these children has to involve the parents and their commitment to maintain such an environment while their children are growing up.

How can we contact you and the University of Iowa for information?

The phone number to contact our cleft and craniofacial clinic is 1-319-356-2168. The number for our nursing coordinator is 1-319-356-3345.

One of the best things about being involved in this field is the opportunity to watch children with cleft lip or palate grow up and lead normal lives. We have followed children born with both cleft lip and cleft palate who have done just about everything and anything imaginable. Many times parents of new born infants with cleft lip or palate feel that there is just no hope for their child to have a life like other children. With proper care and treatment the children should be able to turn the page on their cleft lip and palate and get on with their lives and achievements.