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Craniofacial clinic uses team approach
Until recently, when a baby was born with a cleft lip and palate, a
pall cast over the delivery room where the new mother’s joy sank to
sadness. Doctors and nurses, especially in smaller hospitals, have felt
unable to provide necessary care for these new patients and would
quickly transport the newborn to MUSC.
“The immediate problem is that the newborn has to be fed,” said speech
pathologist Katy Hufnagle, an expert in diagnosis and management of
children with cleft palate and other craniofacial anomalies. “A baby
with a cleft palate is unable to generate a strong suck, because the
cleft in the palate prevents the normal division between the mouth and
the nose that results in the negative pressure that is required for
sucking. Simply stated, it is much like sucking from a straw with a
hole in the side. So, babies with cleft palates are not normally
successfully breastfed, but mothers are always encouraged to secure a
good breast pump so that they can avail their infants with all of the
benefits of breast milk.”
With a bit of parent training, the right equipment, and a little
patience, babies with cleft palates nurture easily and grow well.
MUSC has a long history of caring for children with cleft lip and/or
palate, and their families. In 1996, a plastic surgeon with training in
the surgical management of children with cranial anomalies joined MUSC.
Richard Kline, M.D., working with pediatric neurosurgeons, provided the
scope of practice that allowed the existing Cleft Palate Team to become
recognized by the American Cleft Palate/Craniofacial Anomalies
Association as a Cleft Palate and Craniofacial Anomalies Team.
Dr. David White
checks the baby daughter of Lester Cobb for progress of her cleft
condition with part of the team members.
Today, the MUSC multi-disciplinary expert team, directed by Carlos
Salinas, DMD, comprises specialists in plastic surgery,
orthodontics, oral maxillofacial surgery; otolaryngology (ear, nose and
throat), audiology, neurosurgery, prosthodontics, ophthalmology,
pediatric dentistry, genetics ,and speech pathology. “The MUSC
Craniofacial and Cleft Palate team is very comprehensive and
interdisciplinary, and has exceeded the requirements of the American
Craniofacial and Cleft Palate Association guidelines for these types of
clinics,” said Salinas.
A 22-year MUSC veteran, Hufnagle has seen parents’ apprehension over
caring for a child with cleft palate evaporate as early detection and
counseling better prepare them, and their physicians to deal with the
complexities of craniofacial anomalies.
By the 12th week of gestation, the face and mouth are being formed.
During this time the lip and palate closure may be interrupted,
Ultrasound can often detect a cleft lip early in a pregnancy. The
existence of a cleft of the palate is more difficult to diagnose
prenatally, Hufnagle explained.
An ultrasound image
shows a 20-week-old fetus with cleft lip.
Early in the pregnancy, parents may know that their baby will be born
with a cleft lip and, very possible, a cleft palate. This is when the
MUSC team kicks into action.
“We get to know these families during the prenatal phase,” said
Hufnagle, whose expertise is in feeding newborns with craniofacial
anomalies. “These families are referred to us by the MUSC Pre-Natal
Wellness Center genetic counselors or by OB/GYNs, and we educate
them, train them, and provide them with the tools and resources to feed
their baby in a way that is nurturing and rewarding.”
The entire family is part of the training and counseling process so
that parents and siblings all are assured, comfortable, prepared, and
all myths are eliminated. The families are now connected with the
craniofacial team prior to the birth of their baby, and they have
available resources for any questions or concerns that may arise,
“Now, we don’t see a lot of these babies being helicoptered down to
MUSC, because when the baby is born, the mother has the knowledge and
the equipment for feeding her new baby,” Hufnagle said.
These babies also face far fewer surgeries than children with cleft
palates underwent in years past.
“You’ll hear some adults who have cleft lip and palate say they had to
undergo 20 surgeries,” Hufnagle said. “Now, it’s not a lot of
surgeries; maybe three to five. By the time the child is 21, a little
bit of dental fine-tuning may be all that remains.”
Dr. Carlos Salinas
and Sherry Cannon review the patients and doctors schedule.
Salinas said the first surgery may occur at 3 months, but by 12
months the palate and the lip are closed. Certain procedures are not
completed until the child reaches puberty or maturity, so that surgery
does not interfere with a person’s growth and development.
While no specific gene or chromosome has been identified as causing
cleft palate, the potential for clefting exists in anyone regardless of
their family history. Environmental factors, including drugs taken by a
pregnant mother may cause clefting. A family history normally indicates
likelihood for having a child with cleft palate. Still, parents with a
history of cleft palate may also increase the risk of giving birth to
an infant with a cleft lip and/or palate, Salinas said.
Chris and Shelley Talbott of Johns Island learned two months ago that
the baby she is carrying will likely be born with a cleft palate. Until
now, neither of them knew of any family members with a cleft lip or
palate. “However, we just recently learned that a cousin on my wife’s
father’s side has a cleft palate,” said Chris Talbott, who has two
other small children who were born without the facial anomaly.
Talbott said that when they learned that their third child might be
born with a cleft palate, “We were kind of scared,” he said. “But now,
we’re pretty confident after talking to Katy Hufnagle and learning that
there will be a good outcome.”
Parents like the Talbotts, or the Cobb family from Florence whose baby
girl has a cleft lip, also feel more confident that their children will
grow up with little to no signs, in either appearance or in the sound
of their voices, that they had cleft palate. This is because of the
focused approach taken by each member of the craniofacial team, each of
whom commit their time gratis to these families.
During clinic, each patient is seen by different specialists. By day's
end, the team holds a case conference in which each patient is
discussed in detail and a treatment consensus is reached, Salinas
said. “We also have opportunities to examine patients with more complex
problems, for example clefting with associated malformations, or cases
with genetic syndromes; or cases with malformations of the skull. It is
here, again, when the interdisciplinary team provides the added value.”
Patients and parents are provided with a diagnosis and appropriate
treatment plan; and the parents receive genetic counseling to explain
the cause and natural history of the disorder and to elucidate the
risks of it occurring again. All of the information and recommendations
from the team visit are compiled in a report and sent to the family and
primary care physician.
“This is the paradigm example of a multidisciplinary clinic,” Kline
For more information, contact Sherry Cannon, clinical coordinator,
Friday, June 6, 2008
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