Frequently Asked Questions
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Published: 06/20/2007
Updated: 06/20/2007
Why was my child born with cleft lip and/or cleft palate?
Clefts are generally believed to have some genetic (hereditary) causes, although certain environmental factors do increase the chances that a baby will be born with cleft. The truth is that the cause of cleft lip and palate is not entirely clear for the majority of affected babies. Do not feel as though you have done anything wrong to have caused the condition.
If heredity plays the key role in determining whether a child is born with a cleft, does that mean that I will have other children (or grandchildren) with clefts?
Not necessarily. Even geneticists, whose science it is to make predictions about heredity, cannot predict with 100 percent accuracy whether or not a given pair of parents will have a baby with cleft palate. But geneticists can help to figure out what the chances are, given your particular family history.
For instance, if you and your husband have had a child with cleft, but had no history of cleft in your families previously, there is a one in 25 (4 percent) chance that your next child will have a cleft. That is a low percentage, but it is much higher than for families with no history of cleft whatsoever (one in 750, or less than 1 percent).
What is the cleft palate team?
The cleft palate team is the group of professional specialists who will cooperate in the treatment of your child. The treatment of cleft lip and cleft palate is so complex that no one specialist can answer all of the questions and handle all of the problems that may arise. The team approach allows your child to benefit from coordinated, specialized care in all aspects of his or her treatment program.
Will my child be treated by the same cleft palate team as long as the treatment process continues?
Because the treatment of clefts can involve repeated surgeries, orthodontics, and other processes extending (in some cases) beyond adolescence, it is very possible that some of your team members may retire or change jobs over that span of time. It is also possible that your family will move to another part of the country.
The beauty of the team approach, however, is that the professional "team players" are skilled at making smooth transitions to other players, or, when necessary, to other teams. In this way, continuity of treatment and follow-up are assured.
How dangerous is the surgery my child will have?
All surgery involves some risk to the patients, but the success rate of these operations is very high. Your surgeon and anesthesiologist are skilled professionals who will not take unnecessary risks with your child's health or well being. After the surgery is over, our families tell us that, although the process was stressful for the parents, the result in the patient (improved appearance and speech) make it all worthwhile.
How much will the surgery hurt?
Since your child will be asleep under general anesthesia during the operation, no pain will be experienced. After surgery, there will be a period of discomfort, and during that time it will be important for your nurses (and later you) to give your child appropriate doses of pain medication. Our nurses will explain how to tell if the baby is in need of pain medication. Most babies can be switched from stronger pain medications to plain Tylenol within two to three days of lip or palate surgery.
What is otitis media?
This refers to an inflammation of the middle ear, usually due to the improper functioning of the Eustachian tube. Sometimes otitis media will clear up after several days of taking antibiotics, but in other cases the surgical placement of ventilation tubes is necessary. If otitis media is diagnosed and treated soon enough, it should not lead to any permanent damage to hearing; but repetitive bouts can present speech problems, since otitis media can cause temporary hearing loss at a stage in an infant's life when he/she is learning to make meaningful vocal sounds.
What kind of lasting impact will all of this have on my child?
Children born with cleft lip and/or cleft palate can grow to be normal, happy, successful adults, but they do face some special problems and issues. They may need to go through a lengthy series of surgeries and orthodontic treatments. They can face some teasing and social problems at school. In some cases, adolescents who are being treated for cleft experience increased social awkwardness. Your cleft palate team is geared to help you get through the difficult times.
