Our two-week old baby has Pierre Robin Sequence (PRS) with a soft cleft palate. Swallow study shows nasal reflux. No air problems, but she won't swallow anything. What we can do until cleft repair at one year of age?
Usually babies with this problem do learn to feed orally. However, some children with PRS have difficulty breathing while suckling and will require some additional help. It is generally true that an interdisciplinary team best manages children with clefts of any sort. If this family has yet to receive team care, I would advocate that as a first step towards answering this question.
My three-week-old son has a cleft palate and lip. We wanted to know if you would need the foreskin from his penis to correct his lip?
It would be highly unusual to repair a lip in that fashion.
How many surgeries is average to correct the palate and make it not-so-noticeable?
That varies from patient to patient. At the minimum, one surgery is needed to repair the lip and a separate surgery is needed to repair the palate. However, several surgeries are needed to make the lip appear as normal as possible. And sometimes additional surgeries involving the palate are needed to improve speech.
Does a cleft palate always result in a cleft lip?
No. About 50 percent of children with clefts have clefts that involve the lip and palate. Another 25 percent have clefts that involve only the lip and the remaining 25 percent have clefts that only affect the palate.
What can be done for the child's speech, from the beginning of infancy until school?
Most importantly early on is to treat the child as you would any other child, meaning talk to the child, expose the child to lots of good language. That is necessary for all of us to learn speech normally. Then, by the time your child is a year old, he or she will begin to produce their first words, and an evaluation by a speech pathologist is indicated. In fact, it is a good idea to see a speech pathologist earlier than that, such as during the months when the child is beginning to babble. Once that begins to happen, we can get an idea about whether the cleft is affecting the child's speech. It is important to note that only between 20 and 30 percent of children born with clefts of the palate have speech problems requiring secondary surgery after the palate is repaired. The remaining 70 to 80 percent develop speech normally.
What type of specialists should be involved in treating a child with a cleft palate?
At a minimum, the cleft palate team should include a surgeon who specializes in cleft surgical management, a speech pathologist, and a dental professional. Those are the three core professionals that make up a cleft palate team. In addition to that, the cleft palate team may include a geneticist, a pediatrician, an audiologist and an orthodontist. Nurses, psychologists, and other professionals are sometimes involved as well.
Our son has not passed his hearing tests, and we wanted to know if the cleft palate could cause that?
Yes. It can. For the same reasons that some children with clefts have problems with speech, that same problem puts them at greater risk for hearing problems, and the issue has to do with middle ear infections. Children, even without clefts, are at greater risk for acquiring ear infections than are adults. Children with clefts are at yet a greater risk for ear infections. So ear health must be monitored very closely in children with clefts. That is why the ear, nose and throat doctor is an important member of the cleft palate team. That is also why the audiologist is an important member. The audiologist is responsible for measuring the child's ability to hear and the ear, nose and throat doctor or pediatrician can provide the necessary medication to treat ear infections.
What causes cleft palates?
We don't know. We believe that there are genetic causes in some children, we believe that there are environmental causes in other children, and in many children we suspect there is an interaction between genetics and environment. And by environment I mean the environment in which the baby develops in-utero, and the environment in which the mother lives. We know that exposure to alcohol abuse predisposes the baby in the womb to birth defects that may include cleft palate. That disorder is called fetal alcohol syndrome. We suspect there are other environmental issues, which may also interact with genetics to cause clefts. In children with Pierre Robin Sequence, clefts are a result of an underdeveloped mandible, which is the bone that makes up the chin. When the chin is too small, the tongue, as the baby develops, prevents the palate from fusing the way it should in-utero. So the cause of the cleft in that case is a mechanical one and has to do with the underdeveloped chin. Pierre Robin Sequence is a special case where clefts are concerned.
What is the normal recovery time after surgery?
Usually babies require several days of close monitoring after surgery. Recovery usually requires several weeks of special care. During those weeks, the first few days after surgery, movement of the child's hands may be restricted so they don't put their fingers in their mouths and disrupt the surgical repair.
Can you tell if a fetus will have a cleft palate?
That is a very interesting question. The technology is improving such that with ultrasound, it is sometimes possible to identify a cleft during the first few months of pregnancy. Most of the time, however, it is not possible to say for sure whether the baby has cleft or not. The smaller the cleft the harder it is to view with current ultrasound technology. The question that follows that one is if a cleft is observed in-utero can it be repaired before birth. The answer to that is no. Not at this time. There is research being pursued with animal studies that is working in that direction.
Can you tell if a fetus will have a cleft palate? What other ailments are they likely to suffer from, i.e. learning disabilities, etc?
Children with clefts are at a slightly increased risk for learning disabilities, in particular for having difficulty learning to read. Our colleague, Dr. Lyn Richman, has completed several research projects having to do with the learning abilities of children with clefts, and he expresses concern about the learning abilities of children with clefts. Having said that, it seems to be the case that the majority of children with clefts of the lip or palate develop normally unless there are other problems that occur along with the cleft. It is not uncommon for clefts to occur as part of a larger syndrome. Many of those syndromes include learning disabilities.
Is there currently any research being done regarding cleft palates?
Yes. There is research being done of many kinds. There is research that has to do with wound healing, genetic causes, and environmental causes of clefts, and research that has to do with the optimal means of treatment for cleft palates. The National Institutes of Health provide funds for a wide range of research projects in the area of clefts.
Who is responsible for "repairing" a cleft palate?
A specially trained cleft surgeon typically should repair a cleft palate. This may be a surgeon who is also trained as a plastic surgeon or pediatric otolaryngologist (ear, nose and throat surgeon) or other training prior to cleft and craniofacial training, including maxillofacial surgeons. More important than surgical specialty is the training and expertise and experience of the surgeon.
Does everyone with a cleft palate have to have surgery? What if they don't?
Many children in third world countries do not have the luxury of having surgery. They may grow up with unrepaired clefts. The implications include social isolation, speech problems, and feeding problems. In this country, we are fortunate to have the resources and expertise to provide cleft care for all babies born with cleft. So there is no reason for children in this country to grow up with an unrepaired cleft palate. The primary reason for repairing clefts includes appearance and speech development, as well as maximizing the health of the ears and facilitating eating. Submucous cleft palates may not need to be repaired and speech and feeding needs dictate the necessity of any surgery for these.
What kind of follow up is needed after surgery?
After surgery, it is really important for the family to follow up with the cleft surgeon to ensure that the healing process is progressing the way it should. There is always a risk of infection and breakdown of sutures at the surgical site, and so it is very important that the family stay in close contact with the surgeon post-operatively.
Our son has an exposed sinus passage that drains. Is there anything we can do to prevent the mucus from causing him to choke?
You need to see your doctor about that. Ear, nose and throat doctors specialize in problems involving the sinuses. You may ask your pediatrician whether a referral to an ear, nose and throat doctor is indicated.
Does a cleft palate have anything to do with lisps?
No. Lisps are usually caused by incorrect learning and not due to structural problems like cleft palate. Consequently, treatment of lisps is best accomplished by speech therapy.
Is there a high risk of infection after surgery?
No. There is not a high risk provided the family follows the at-home instructions provided by the surgeon and the nursing staff, and provided they follow up with the surgeon during the post-operative period.
What is a "hair lip?"
The correct spelling is harelip. That is in reference to the appearance of the lip of a rabbit. It usually carries a negative connotation so we do not encourage its use.
Is it difficult for children to eat and drink with a cleft palate?
Yes. But it can be managed, provided the parents are given appropriate training and provided appropriate bottles and nipples are used. The child with an unrepaired cleft palate can learn to feed by bottle. normally. Those problems are usually short-term since a cleft lip is usually repaired at four to six months of age and a cleft palate is usually repaired around 12 months of age, so feeding problems caused by the cleft should not last longer than this.
What does surgery entail?
Surgery involves moving tissue from the edges of the cleft into the cleft area. It is rare that tissue is needed from elsewhere in the body to close a cleft. Families who need to know more about cleft repair should be advised to talk with their surgeon.
Where can I find more information on cleft palate?
The American Cleft Palate Foundation provides a wide range of literature written by professionals for families about cleft palate and the problems associated with cleft palate. Families can call the Cleft Palate Foundation at the cleft line, which is open 24 hours, and the number is 1-800-24cleft. Many of the publications that are available through the Cleft Palate Foundation can be obtained through the website. They are all free of charge. I would encourage families and children with clefts to contact the Cleft Palate Foundation any time they have questions about cleft palate.
Why do clefts cause speech problems?
Clefts affect the soft palate, which is the posterior part of the roof of the mouth. If you move your tongue along the roof of your mouth from front to back, you will notice the roof of your mouth becomes soft as you move your tongue towards the back. The soft palate moves when we speak, to prevent air from escaping into your nose and causing a hypernasal quality. When that happens, it becomes difficult for the child to produce many of the speech sounds in English. Most of the speech sounds in English require that the space between your mouth and your nose behind the soft palate be completely closed. The only exceptions are the sounds M N and the sound at the end of ING. Those are the only three nasal sounds in English. All other sounds are oral sounds and require that the space between the nose and the mouth be closed by the soft palate. Children who have clefts are frequently unable to get complete closure of that space. As a result, they have abnormal speech. The treatment usually involves an extra surgical procedure to make that space smaller and more easily closed by the child with the cleft. Speech therapy also is needed to teach the child proper ways to produce the speech sounds that he or she may have learned incorrectly because of the cleft. All of this treatment for those children with clefts with speech problems should happen before the child starts first grade. So it is very important that the child be evaluated by a cleft palate team on a regular basis, meaning at least twice a year, from the time that the child is born until such time that all the problems associated with the cleft are resolved.
Children with clefts should be thought of as, with few exceptions, normal children who happen to have been born with a birth defect. Cleft palate is among the most treatable birth defects in this country. Families of children with clefts should be encouraged to learn as much as they can about clefts and then to teach those friends and family members that surround them about what they learned. This is that no one carries misconceptions about what a cleft palate is and what it means for the child. The best way for the family to acquire accurate information is to work closely with a multidisciplinary cleft palate team. You can identify a cleft palate team located near you by contacting the Cleft Palate Foundation, Cleft Line, 1-800-24cleft.
Michael Karnell, PhD
Division of Otolaryngology
Creation Date: May 2000
Last Revision Date: February 2012
Peer Review Status: Internally Peer Reviewed