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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1 comments on "CLEFT LIP/CLEFT PALATE"
I am the nurse practitioner for a Craniofacial team. I am performing prenatal consultations for infants born with cleft lip and or palate. I am lecturing on the topic of a prenatal visit with a nurse practitioner who specialized in craniofacial anomalies. I would love some parental feedback on families who had a prenatal visit with a plastic surgeon or nurse practitioner. Helpful or not?
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