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The Vanderbilt Children’s Cleft and Craniofacial Program follows a multidisciplinary team approach that allows patients to see multiple specialists on the same day. This includes both surgical and medical physicians, as well as speech therapy, hearing evaluation and dental care. We coordinate surgical procedures to minimize anesthesia and hospital stays. We also offer telemedicine visits via secure video to provide second opinions or to see families that cannot make the physical trip.
As an example of our team approach, our pediatric neurosurgeon and plastic craniofacial surgeon evaluate each craniosynostosis patient together and decide on the surgical plan. Our physician assistant and nurse practitioner see patients while they are in the hospital and coordinate their medical care with the team of providers. Together, our team members provide a compassionate, patient-based approach and offer multiple treatments for craniosynostosis and associated syndromes. Not only do they excel in caring for each patient, but they are passionate about improving care for all children with craniofacial differences.
Each child’s treatment is comprehensively planned to meet their individual needs. Care teams can include providers from the following specialties, depending on the needs of each patient:
Helping children face the world through a team approach
A diagnosis of a cleft or craniofacial condition can be overwhelming for all involved; however, Vanderbilt Children’s Cleft and Craniofacial Program’s specialists offer leading expertise in comprehensive cleft lip and palate care, and all forms of craniosynostosis, skull and jaw abnormalities.
The Vanderbilt Cleft and Craniofacial Program is accredited by the American Cleft Palate Craniofacial Association (ACPA) and has a 30-year history of patient care, outstanding results and continued improvement. We perform nearly 100 craniosynostosis and related skull surgeries every year. Because we do so many, our team has a great deal of experience, which means families receive the best possible care.
Specific to craniosynostosis, we perform surgeries to fix the deformities of the face and skull bones, and ease pressure in the skull. We offer three types of surgeries:
Specific to cleft care, the Vanderbilt Cleft and Craniofacial Program is also one of the few programs offering onsite dental and orthodontic experts. For cleft patients, our specialists participate in routine evaluations, can provide ongoing care, and offer nasoalveolar molding (NAM), an orthopedic appliance used to actively mold and reposition nose and mouth tissues before surgery. To help put expectant mothers of babies with a cleft at ease, we have a prenatal visit detailing the spectrum of treatments babies may need.
Benefits of NAM include:
Our program’s success is based on our experience helping families deal with complex medical and surgical needs. The medical directors, program lead and the team of providers are passionate about providing continuous care from the prenatal visit to early adulthood. Should a child have a medically complex issue, we maintain a multidisciplinary team of members who can assist. We offer onsite or telehealth consultations, with single providers or as a team, to accommodate the needs of the family and to ensure patients receive the most appropriate care.
Our team members offer an extraordinary level of expertise and have trained at some of the most renowned fellowships in the country, including Emory, Johns Hopkins, New York University and the University of Pittsburgh. We also have a full-time research coordinator and a dedicated surgical outcomes group, and we have published more than 30 articles about craniosynostosis and craniofacial disorders.
The Vanderbilt Cleft and Craniofacial Program champions each child receiving the medical care they need, and we help families overcome problems with cleft palate and craniofacial issues by working to identify them early. That's why our team works closely with the Vanderbilt Fetal Center. Together, we offer families more convenient, compassionate care tailored to each child and their family.
Medical conditions most commonly treated in this program include:
Medical treatments often provided include:
At Children's Hospital we have many methods to treat craniosynostosis. Our experts will determine the one that is clinically appropriate for your child and appropriate for your family’s lifestyle and situation. Treatment depends on your child’s symptoms, age and general health. It will also depend on how severe the condition is.
When the diagnosis is made before a child is age 1, surgery is usually the recommended treatment. The goal of surgery is to fix the deformities of the face and skull bones. It can also ease pressure in the skull, if it is present.
It is usually best for your baby to have the surgery before he or she reaches age 1. This is because the bones are still very soft. It is easier to fix the deformities at that time. Your baby may need surgery at a much earlier age if the condition is more serious. Most surgeries are done between 3 and 8 months of age. Before surgery, your child's healthcare provider will explain the procedure.
When the diagnosis is made after 1 year of age, nonsurgical treatment is often recommended if the skull's shape appears close to normal.
How do we treat craniosynostosis?
Surgery
The main treatment for craniosynostosis is surgery. The goal is to correct the abnormal head shape and give the growing brain more room. At Children’s Hospital, we use a team approach to treatment. The pediatric neurosurgeon and plastic craniofacial surgeon perform the surgery together. You will have the opportunity to meet with both surgeons to discuss the best treatment plan for your child.
We offer different treatment options at Children’s Hospital. Your child’s age is the most important factor when deciding which option is best.
Endoscopic-assisted suture removal
For babies 2 to 5 months of age, we can often offer endoscopic-assisted craniosynostosis repair. Typically the neurosurgeon and craniofacial surgeon work together. Through one or two small incisions (cuts), they work through the skull to remove the fused suture.
This surgery typically lasts one to two hours, and rarely requires a blood transfusion. Your baby will stay one night in the Intensive Care Unit (ICU). We often let these patients go home the day after surgery. Parents (or caregivers) can stay in the same hospital room while the baby is with us.
The day after surgery or next business day, we will help arrange an appointment to fit your baby with a helmet. It usually takes one to two weeks to create the custom-made helmet. Your baby will need to wear it all day and night, except during bathing, for six to nine months after the surgery. The helmet helps give your baby a more normal head shape.
Open cranial vault remodeling
The second treatment option is open cranial vault remodeling (CVR) and a molding helmet is not generally needed after the procedure. This treatment involves a hidden incision in the hairline across the scalp. The neurosurgeon and craniofacial surgeon work together to carefully cut the skull bones, protecting the brain and eyes as they do. The surgeons reshape the bones to make the skull immediately appear more round and normal. They then fix the bone into place with thin, but very strong, plates and screws. These tools hold the bones’ correct shape in place while they heal together. The plates and screws absorb into the baby’s body, so they never have to be removed.
Open CVR takes about four to five hours and sometimes requires a blood transfusion. Afterwards, your baby will spend about three to five days in the hospital, with the first part taking place in the ICU. Although your baby will be attached to equipment that measures blood pressure and urine, you can hold your baby the night of surgery and keep to your normal feeding routine.
Cranial vault distraction
For more complex or severe cases of craniosynostosis, or if multiple sutures are involved, your provider may discuss cranial vault distraction as a treatment option with you. In this procedure, the doctor places a metal distraction device (a kind of plate and screw) between cuts in a skull bone. By making small turns in the devic, the doctor can slowly expand the skull. This allows the brain to expand and new skull bone to form. These turns begin one to three days after surgery and end about one to three weeks after the device is placed.
What are the options for children with craniosynostosis syndromes?
Some babies have what is called craniosynostosis syndrome, such as Apert’s, Crouzon’s, Pfieffer’s. or Muenke’s. Some babies with other complex medical conditions are considered to have craniosynostosis syndrome. We also see these babies in our Cleft & Craniofacial Team clinic.
Regardless of which treatment option you and your providers decide is best for your baby, the Craniofacial Team will be able to address many of the needs your child may have in one visit.
Why choose Children’s Hospital for craniosynostosis surgery?
The Vanderbilt Cleft and Craniofacial Program has a 30-year history of high-volume patient care, outstanding outcomes, and a goal of always improving. We perform 70 to 100 craniosynostosis and related skull procedures per year. Working with our team anesthesiologist and giving special medications to reduce blood loss, less than half of all children undergoing open cranial vault remodeling require a blood transfusion, and fewer than 1 percent undergo endoscopic repair.
Our program includes surgical specialists from plastic surgery, neurosurgery, ENT and oral-maxillofacial surgery, as well as genetics, psychology, speech, feeding, nutrition, hearing and dental.
We are a patient and family-centered team. Our program coordinator, Clare Gargaro, P.A., will help coordinate your visits with multiple providers on the same day.
Dr. Kevin Kelly and Dr. Michael Golinko are the plastic craniofacial surgeons, and Dr. Chris Bonfield is our team neurosurgeon. They are pediatric and specialty board certified and were trained at world-renowned institutions such as Johns Hopkins, NYU, Emory and the University of Pittsburgh.
Together, they bring a compassionate, patient-based approach and offer multiple treatments for craniosynostosis and associated syndromes. They individually tailor treatment for each patient, offering endoscopic-assisted craniosynostosis repair, open repair and cranial vault distraction.
Not only do they excel in caring for each patient, but they are passionate about improving care for all children with craniofacial differences. With a full-time research coordinator and dedicated surgical outcomes group (SOCKS), they have published over 25 articles related to craniosynostosis and craniofacial disorders. Through multiple ongoing studies they are learning more about craniosynostosis and improving patient care.
