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.
Duke Guide to Care of Children with Cleft Conditions
