At University of Florida Health in Gainesville, our chief of pediatric neurosurgery, Lance Governale, MD, co-directs the multidisciplinary craniosynostosis program with pediatric craniofacial plastic surgeon Jessica Ching, MD. The UF Health Craniofacial Center has nearly 500 actively managed patients at any given time and continues to grow by about 15% per year because of the high-level care provided. We are proud to offer the full range of surgical options for craniosynostosis, including minimally invasive endoscopy, springs, and distractors. Ultra low dose CT scanning minimizes radiation exposure for our patients, and intraoperative blood management protocols avoid the risks associated with transfusion. Our ACPA-approved multidisciplinary craniofacial clinic allows patient management by the full team in one visit.
At UF Health, our physicians and staff are committed to providing leading-edge, state-of-the-art care to improve the quality of life of our patients. Ranked among the best in the nation by U.S. News & World Report, the pediatric neurology and neurosurgery program at UF Health Shands Children’s Hospital is the highest-ranked program in North and Central Florida.
The goals of craniosynostosis surgery are to unlock and reshape the bones. Historically, craniosynostosis has been treated using surgical methods that involve an incision from ear to ear and the removal, reshaping and reattachment of affected bones. However, at UF Health Shands Children’s Hospital, advances in technology are allowing us to conduct more of these procedures in a minimally invasive manner.
With traditional surgery, the procedure lasts approximately four hours and is performed in conjunction with a craniofacial plastic surgeon. A blood transfusion is often necessary. The child is typically observed overnight in the ICU and then an additional three days on the regular neurosurgical floor before discharge. Pronounced periorbital edema is normal, but generally resolves before discharge. To reduce surgical risk, this procedure is performed around the age of 6 months. Younger infants are very unlikely to experience increased intracranial pressure before then. Syndromic and multiple suture cases are more frequently treated using traditional surgical techniques. Because reshaping occurs at the time of surgery, no further interventions are required.
Minimally invasive surgery involves two small incisions and the removal of only the fused suture to unlock the bones. The surgery lasts approximately one hour and rarely requires a blood transfusion. Postoperatively, the child is observed overnight on the regular neurosurgical floor and is then discharged. Usually, there is no periorbital swelling. Minimally invasive surgery produces the most successful outcomes when performed on children before the age of 6 months. With minimally invasive techniques, reshaping occurs postoperatively with the assistance of either a cranial molding helmet or implanted custom springs.
The cranial molding helmet has a hard outer shell with moldable foam on the inside. It is worn 23 hours per day until the child’s first birthday. The helmet does not press the skull into shape but rather directs the growth of the skull into a more normal shape. Because the helmet relies on the high rate of skull growth in the first year of life, helmet-assisted surgery should be done between 10 to 14 weeks of age. The helmet requires frequent visits to an orthotist but no additional surgery.
Stainless steel cranial expander springs are implanted after the fused suture is resected. The springs are then removed three months later. The level of spring tension is selected based on the patient’s age, bone thickness and deformity severity. Spring-assisted surgery is performed between the ages of 3 to 6 months. The springs require a second surgery for removal but not the use of the helmet.
In some cases, when multiple sutures are fused, cranial distraction can be employed to create more intracranial volume. After the bones are unlocked, distractors are implanted spanning the bone cut At a rate of 1mm per day, the sides are separated by turning the screw that connects them using posts that project through the skin. After 30 days, distraction osteogenesis results in 3 cm of new bone. The posts are then removed and the skin is closed in the office .Three months later, the distractors are removed at a second surgery.
The University of Florida Craniofacial Center’s interdisciplinary team approach consists of many specialists working together to provide the best possible integrated care. Our team consists of health professionals from pediatrics, plastic/craniofacial surgery, clinical psychology, speech-language pathology, otolaryngology, audiology, nursing, pediatric dentistry, oral and maxillofacial surgery, orthodontics, social work, and genetics.
Other specialists available for consultation to the team include professionals from genetics, neurosurgery, ophthalmology, and education. Whatever your child’s need, we are able to provide the service or collaborate with other professionals for the best possible outcome.
We Can Help With:
Pediatric Health Care/Nursing
Oral and Maxillofacial Surgery
Plastic and Reconstructive Surgery
About Our Services
Because of the high incidence of hearing loss associated with cleft palate and other craniofacial anomalies, the audiologist is concerned with prevention, early detection, and intervention. As hearing impairment is often episodic, routine hearing evaluations are desirable. These evaluations include various measurements of hearing, sensitivity, and ear function.
The UF Craniofacial Center’s psychologist provides consultation to parents and children regarding normal child development. For children with facial disorders, consultation is also available to help the child and family cope with the disorder and the required medical treatment. Additional diagnostic assessment is available for the evaluation of emotional, cognitive, behavioral, and educational problems or concerns.
Occasionally patients with speech and/or swallowing problems related to velopharyngeal insufficiency are not candidates for intraoral surgery or they do not wish to undergo surgery. Many of these patients can benefit from an oral prosthesis such as a palatal lift or a speech-bulb obturator. In these cases the UF Craniofacial Center’s prosthodontist works closely with the other team members, particularly the speech-language pathologist, in order to obtain maximum improvement in the patient’s speech and resonance quality.
Pediatric Health Care/Nursing
Our nurse is interested in the general health of the child. The nurse is responsible for coordinating appointments and referrals for patients and providing information about feeding strategies and general care before and after surgery. The nurse helps families access resources such as Children’s Medical Services for financial assistance as needed.
Oral and Maxillofacial Surgery
The UF Craniofacial Center’s oral and maxillofacial surgeon specializes in the diagnosis of oral diseases as well as reconstruction of the face and jaws. This includes treatment for skeletal malformations which may be congenital, developmental, syndromic, or traumatic. Some of the procedures include orthognathic surgery, alveolar cleft bone grafting, extraction of teeth, and placement of dental implants.
Orthodontics is a discipline in dentistry that is involved with the diagnosis and treatment of positional and growth problems involving the teeth and jawbones. The center’s orthodontist collaborates with other team members to formulate the nature and sequence of treatment which will achieve optimal esthetic and functional results for the individual after facial growth and treatment is completed. To achieve these goals, certain considerations are made to integrate treatment in a timely manner with the dynamics of ongoing craniofacial growth and development during the younger and adolescent years. Treatment may begin during the primary dentition (baby teeth) although most of orthodontic care begins after the permanent teeth have evolved.
The University of Florida otolaryngology team is particularly concerned with the health and function of children’s ears and the control of otitis media. Chronic middle ear infection (otitis media) can impair the development certain speech and intellectual skills. If ear and hearing rehabilitation is to have maximum benefit, it needs to begin before six months of age. Our efforts focus on early restoration of normal hearing and preventing middle ear infections from progressing to more serious problems.
The Department of Pediatric Dentistry at the University of Florida provides dental care to children with cleft lip and palate and other craniofacial anomalies. These services include: (1) preventive dentistry through diet counseling, oral hygiene instructions, and fluoride therapies; (2) restorative dental treatment to restore decayed, injured, or malformed teeth; (3) prosthodontic replacement of missing teeth with transitional fixed or removable partials; and (4) preventive or interceptive orthodontic care through identification, referral, or treatment of orthodontic problems at an early age.
The center’s pediatrician and pediatric nurse practitioner are interested in the special needs of children with facial differences. They monitor the child’s growth and development and help address any feeding or nutritional concerns. One of their roles is to develop a comprehensive clinical impression incorporating health, developmental, and psychosocial domains. The pediatric team’s goal is to provide health promotion, illness prevention, and screening for existing health problems common to children with craniofacial malformation through physical and developemental screening, education of the patient, family, and health care staff. Additionally, the team will help identify resources within the community that will best serve each family.
Plastic and Reconstructive Surgery/Craniofacial Surgery
Our team evaluates and treats children with multiple craniofacial anomalies which include, cleft lip, cleft palate, velopharyngeal incompetence, craniosynostosis, Treacher Collins, microtia, as well as other cranial vault conditions. These children frequently require secondary operations in order to refine facial aesthetics and correct malocclusion. Nasoalveolar molding is used for patients with cleft lip and cleft palate to create a better aesthetic outcome. Cranial molding is conducted in conjunction with orthotics for patients in need with cranial anomalies. Additionally, we provide ear reconstruction in patients born with microtia and patients with traumatic injury.
The Craniofacial Center’s Social Worker provides supportive psychosocial services to the patient and the family to include financial, educational, social, and emotional support. The Social Worker also helps coordinate appointments and referrals for patients. Political advocacy, bullying prevention/response, and social media for families are also discussed. Because we know that having a child with a chronic condition affects all facets of life, the social worker makes certain that the needs of the patient and family are being met.
The role of the speech-language pathologist is to evaluate how well the patient is able to communicate. At a very early age, we are interested in the child’s language development, both receptive and expressive language skills. We evaluate, with the parent’s help, how the child responds to speech and what kinds of sounds or words the child is producing. The inability to make certain sounds my be the result of abnormalities of certain oral, nasal, or pharyngeal structures.
Not all children who have a cleft lip/palate or other facial disorder will need speech therapy. For those who do, our goal is to begin therapy as early as is practical and beneficial to the child. The objective is to eliminate as many of speech problems as possible before the child enters school.
Some speech problems, such as consistent hypernasality and loss of air through the nose, require special instrumentation such as videofluoroscopy (x-ray) and fiberoptic nasendoscopy (small scope inserted into the nose) to enable the speech pathologist to fully diagnose the problem and identify a treatment plan.
Marissa and Jon Yeatman gave birth to a healthy baby boy named Nathaniel on Feb. 9, 2018, in Tallahassee, Florida. He was their second child and made their daughter a big sister, a position she was eager to take on.
Three days after his birth, Marissa and Jon took their baby to the pediatrician for his newborn checkup, and the doctor noticed an abnormality in the shape of Nathaniel’s skull.
“The pediatrician took pretty much one look at him and said, ‘Let’s take some X-rays,’” Marissa said.
Though Nathaniel’s head only had a mildly pinched appearance, his abnormal head shape foreshadowed a much more serious problem. Nathaniel was diagnosed with sagittal craniosynostosis, a birth defect in which one of the fibrous joints between the bones of Nathaniel’s skull closed prematurely before his brain was fully formed.
“Usually when you look at a newborn’s head on an X-ray, it looks like the skull is kind of shattered, but part of his looked like it was already formed and closed like an adult,” Marissa said.
Their pediatrician recommended Lance S. Governale, M.D., UF Health’s chief of pediatric neurosurgery who has a focus in craniosynostosis. The Yeatmans contacted him immediately, hoping to resolve the issue as quickly as possible.
Dr. Governale knew he needed to treat the problem early, so he scheduled the Yeatmans for an appointment close to their home at the UF Health Pediatric Specialties practice in Tallahassee.
“At that point, he was like new, new to the world,” Marissa said. “He was only about a month old. So, our options were kind of broadened, because we caught it so young.”
To gather more information, Dr. Governale obtained a special CT scan. CT scans involve some amount of radiation exposure, but at UF Health’s Gainesville and Tallahassee locations, Dr. Governale introduced ultra- low-dose CT scanning. These scans provide 3D views of the skull at a radiation dose similar to a few X-rays and much lower than standard CT scans.
After Nathaniel’s CT scan confirmed the condition, Dr. Governale laid out three different treatment options.
“The skull is made up of multiple different bones with sutures in between them,” Governale said. “Sutures allow the skull to grow. If they close early, it alters the head shape. In addition, suture closure can restrict skull growth while the brain is trying to grow leading to increased pressure.”
Craniosynostosis is typically treated surgically, due to the need to unlock the bones and reshape the skull. The traditional surgery, larger and more invasive, would probably require a blood transfusion and a longer hospital stay, but Dr. Governale was committed to offering minimally invasive options.
“One minimally invasive option consists of unlocking the bones through one or two small incisions with the assistance of an endoscope, and then using a helmet afterward to reshape the skull,” Governale said. “The downside is that the helmet has to be worn for 23 hours per day for upwards of nine months. It also requires regular visits to a helmet orthotist, who may not be located in the family’s region, like Tallahassee.”
Because of these issues, Dr. Governale and his pediatric craniofacial plastic surgery partner, Jessica A. Ching, M.D., introduced a second minimally invasive option to UF Health — cranial expander springs. With springs, a helmet is not required. UF Health Shands Children’s Hospital in Gainesville is the only site in Florida offering this newest treatment option.
Though she trusted the physician’s expertise, Marissa was relieved to feel as if she wasn’t forced into one specific treatment option for her baby boy. She felt that Dr. Governale let her have the final say.
“He was really good about not pushing one option over the others,” Marissa said. “He said if there was one option that was better than the other two, he wouldn’t offer the other two.”
That third, minimally invasive option for Nathaniel was the one that the nervous parents eventually chose.
In May of 2018, Nathaniel underwent craniosynostosis surgery with cranial expander spring implantation. Drs. Governale and Ching made one incision, used an endoscope to help open the sealed suture and then put in two cranial expander springs to reshape the skull. Three and a half months later, they went back in and took out the springs, completing the process — no helmet required.
A team approach is essential for treating craniosynostosis. The physicians work side-by-side to tailor the treatment to the patient and involve other specialists if needed, including ENT, oral surgery, dentistry, genetics, speech therapy, audiology, psychology and social work. Although Nathaniel did not need those additional specialists, he did have one more added benefit of Dr. Ching’s participation in the surgery — a beautiful closure with minimal scarring, something Marissa and Sean are very thankful for.
“She did an amazing job with all of his stitches and everything,” Marissa said. “The scar was actually, originally, a pretty odd U-shape. As his head is growing, it has started to stretch and look straighter. Already, you can’t see the incision that much.”
Today, Nathaniel is a healthy 1-year-old, and you can’t tell there was ever anything wrong with his skull.
“He had an excellent reshaping. His head looks normal now and is allowing his brain to grow,” Governale said. “We’ll be watching him, but hopefully, because he’s otherwise healthy, he won’t encounter additional issues.”
Nathaniel’s more focused on doing his favorite things, now that he doesn’t have to worry about surgeries or doctors’ visits. His big sister is his greatest source of entertainment.
“He loves his sister. Hands down, she’s the one that can make him smile the most,” Marissa said. “Any time she gives him attention and plays with him, he’s just so happy. They’re cute together.”
Nathaniel started walking recently and is very mobile. He loves eating and playing with a little lion rattle. The lion has been with him from the day he was born through every surgery after that.
Like that little rattle, Marissa and Jon have been there the whole way, too, and have learned a lot through their hardest moments with Nathaniel. Marissa offers advice to other parents who are about to undertake their own harrowing journey with craniosynostosis.
“I would say don’t panic,” Marissa said. “You’ll get through this. Honestly, the doctors know exactly what they’re doing. Trust them.”
She also encourages parents to trust their gut when it comes to health care decisions for their children.
“It’s very, very scary seeing your newborn baby go into surgery,” Marissa said. “It’s just very difficult. When Nate was waking up after his first surgery, he was very fussy. That whole day he was fussy: upset, disoriented, crying. I was second guessing our decision while trying to comfort him. Then, the next day, he woke up and smiled and was suddenly completely himself again. Don’t second guess yourself. You know what’s right for your family and your child. It’s crazy how resilient children are.”