At this leading center of surgical and rehabilitation care for conditions from cleft lip and palate to craniosynostosis, board-certified and eligible physicians partner with a range of specialists to ensure safe, successful procedures and wraparound therapeutic services.
As one of the largest pediatric craniofacial programs in the United States, Gillette Children’s Specialty Healthcare offers services for children who have a range of conditions, including cleft lip and palate (CLP), craniosynostosis, torticollis and plagiocephaly. Many of these conditions have the potential to combine functional with aesthetic disability, affecting children’s feeding, hearing, speech and, potentially, cognitive development. To meet the complex needs of these growing patients from infancy through adulthood, Gillette has assembled a team of board-certified and eligible physicians and surgeons, as well as dentists, orthodontists, specialty trained nurse practitioners, audiologists, speech and feeding specialists, dietitians, physical therapists, orthotists and more, all focused on working together to ensure each patient the best possible outcomes.
Martin Lacey, MD, FRCSC, craniofacial plastic surgeon at Gillette and Adjunct Assistant Professor at the University of Minnesota, brings a long history of children’s craniofacial and cleft surgery to the program, starting at the University of Western Ontario, and then at the University of Minnesota. He brings with him an academic focus on developing and refining treatments for CLP and craniosynostosis, and he’s excited about the future of pediatric craniofacial surgery.
“The surgery continues to evolve,” Dr. Lacey says. “The changes have been so dramatic in my practice and my lifetime. I went from using wires to metal plates and screws to absorbable hardware. Even the techniques for performing cleft lip repair have evolved, resulting in less scarring and better lip balance.”
“At Gillette Children’s, we have really high quality outcomes and a very low complication rate. And to have both of those, you need to be doing a high volume so you are very comfortable — that includes the whole team, from anesthesia to pre-and postoperative nursing. It’s important for all the elements to be in place.”
— Martin Lacey, MD, FRCSC, craniofacial plastic surgeon at Gillette Children’s and Adjunct Assistant Professor at the University of Minnesota
Cleft Lip and Palate: Function and Aesthetics
Technical advances tend to make procedures easier and more effective for young patients. Cleft lip and palate reconstruction, for which Gillette is a destination hub, has benefited from distraction osteogenesis, a technique that uses a bone extender rather than grafts to amplify deficient maxillary bones through gradually increasing tension on the bones and encouraging growth. Other advances come in the area of imaging, where quicker 3D scans capture accurate information without the need for sedating young patients.
“It’s a fabulous adjunct for us and for parents,” Dr. Lacey says. “Short-duration imaging and less-invasive procedures are true advantages in cleft lip and palate treatment and craniofacial surgery, because these children are followed for the duration of their childhood and often undergo multiple procedures.”
Children with cleft lip and/or cleft palate may be diagnosed before birth, though cleft palate alone is more likely to be detected after birth, says Jo Barta, MD, pediatric craniofacial and plastic surgeon at Gillette and Adjunct Associate Professor at the University of Minnesota Medical School. Gillette’s physicians and nurse practitioners often make connections with young CLP patients as soon as they are born, even traveling to visit the baby in the neonatal unit if they are having extra difficulty feeding.
“The biggest thing we focus on after birth is feeding,” Dr. Barta says. “If the muscles of the lip are not knit together properly, or if the palate is open and there is communication between the nose and mouth, babies struggle to bottle- or breastfeed. Milk can escape through the nose; it’s uncomfortable for them. It takes more energy for them to feed.”
Starting with those early days of facilitating feeding, Gillette’s staff work with infants with CLP at every life stage on myriad tasks. Because CLP may impact the muscles used to drain the ears, providers must check hearing and examine ears for infection regularly. In tandem with audiology services, speech therapy is needed to help children begin forming words effectively. Ear, nose and throat (ENT) services are essential as well.
Dr. Barta encourages pediatricians or obstetricians to make early, even prenatal, referrals if CLP is suspected based on ultrasound.
“We get the families in to have a consultation with a feeding specialist,” she says. “My partners and I lay out the timeline of what to expect the first year and the milestones beyond that. Before they are even born, our babies are members of our team.”
By philosophically grounding the care process in the patient’s needs — and, increasingly, abilities and goals — the team begins to empower the patient to become an active, engaged participant early on in his or her treatment.
Surgical care for patients with CLP focuses above all on functionality; as Dr. Lacey says, “Form follows function.” Gillette is fortunate to offer presurgical consultation and treatment with Cheryl Anderson-Cermin, DDS, one of the few providers in the Twin Cities region who offers presurgical molding for children with CLP.
“We get children together with her within a few days of birth,” Dr. Lacey says. “She’s a recognized leader in presurgical orthodontic treatment of children. We can fashion a nasal alveolar molding appliance in the first consultation, and have a great deal of success to get the cleft narrowed down in anticipation of upcoming surgeries.”
Surgeries are staged, particularly for children with CLP: presurgical molding in the first weeks of life followed by cleft lip repair(s) between 3 to 6 months of age, palate repair between 9 and 12 months, followed by a few years of careful attention by a pediatric dentist, audiologist and speech therapist. Some children need additional surgeries; many will need bone grafting or extension in the palate to support their teeth, especially as they move to adulthood. Scar revision surgery of the lip and nose may be performed, too, Dr. Barta says. Teenagers may need braces or jaw surgery and, perhaps, rhinoplasty to improve breathing and support the structure of their nose.
Graham Schenck, PhD, CCC-SLP, craniofacial speech language pathologist, treats communication and feeding/swallowing disorders, and works collaboratively with Drs. Lacey and Barta. Gillette offers a unique collaborative care program that allows a child’s non-Gillette speech therapist to attend an evaluation at Gillette, learn about cleft palate speech, and receive a Gillette-developed, collaborative treatment plan to ensure each child is successful in speech therapy.
“You can see why we follow them from childhood to adulthood,” Dr. Barta says. “What’s so exciting for me about cleft care is every child is different; every treatment is different. That’s what makes it so interesting.”
“One of the most important things with cleft care is having a multidisciplinary team and having us all together in one time and place. Some families travel long distances to have their care with us; they are able to see all their providers on the same day. It lets us be in clinic at the same time, tailor a plan to each child’s needs, and it lets the family coordinate a single visit.”
— Jo Barta, MD, pediatric craniofacial and plastic surgeon at Gillette Children’s and Adjunct Assistant Professor at the University of Minnesota Medical School
A Time-Tested Team
During their long journey through multiple surgeries and numerous hours of therapy for feeding, speech and other needs, patients at Gillette — both those with CLP and those with other conditions — tend to see the same providers repeatedly. Many members of the multidisciplinary team spend their entire career at Gillette; others may serve a residency there, go away for specialized training and return. The physicians, all board-certified or board eligible, perform a high volume of surgeries for CLP, craniosynostosis and other conditions, resulting in successful outcomes and very low complication rates. Together, the team has adopted a series of initiatives that have reduced blood loss in the operating room and lowered transfusion rates to as little as 10%.
Led by the plastic surgeon and, at times, the neurosurgeon, the team surrounding each patient may consist of a pediatric dentist, orthodontist, audiologist, social worker and speech therapist. Specially trained nurse practitioners act as navigators to guide families along their treatment journey.
“We provide care with a whole-team approach,” says Katie Bucka, APRN-CNP, pediatric nurse practitioner specializing in craniofacial and plastic surgery at Gillette. “Our social work department provides resources for families, such as transportation, lodging and supplemental services. We collaborate with primary care providers so they can perform certain follow-ups, such as injections of erythropoietin in preparation for craniosynostosis surgery, closer to home or for feeding and weight checks.”
In addition to care coordination, the nurse practitioners who see patients at follow-up visits play an important role in building an emotional connection with the family who will sustain patients through the treatment journey.
“Families are usually pretty scared at first,” says Martha McGrory, APRN-CNP, pediatric nurse practitioner specializing in craniofacial and plastic surgery at Gillette. “We let them know they can come to us with any questions they have. It’s wonderful to watch them grow as they learn to care for their babies with facial differences. From a nursing perspective, we take a holistic approach, looking at each patient as a whole person and attempting to meet their social, emotional and physical needs.”
Orthotist Jenna Jasken carefully fits a Gillette CranioCap ® to help correct this baby’s irregular head shape.
Craniosynostosis: A Condition for Skilled Hands
Families also need early guidance when their child is diagnosed with craniosynostosis, a condition in which the bones of the skull fuse too early, limiting growth. Patrick Graupman, MD, Associate Medical Director of Neurosurgery at Gillette, works together with Dr. Lacey and Dr. Barta to plan and stage surgeries. Gillette offers correction surgeries for common and rare forms of craniosynostosis, including brachycephaly, plagiocephaly, scaphocephaly and trigonocephaly.
Surgical procedures are designed to reduce pressure on the brain and allow continued brain growth, as well as address aesthetic concerns. Known as cranial vault remodeling, surgery for craniosynostosis may be performed in one or, occasionally, multiple stages.
“While many think this is a cosmetic procedure, it is more often a functional procedure,” Dr. Graupman explains. “A few children with craniosynostosis will develop headaches or learning disabilities, however.”
Gillette surgeons perform two basic forms of cranial vault remodeling: one focusing on the skull and one also involving eye positioning. Sometimes an initial surgery will involve placing distractors, which will then be removed in a second procedure. The surgeons at Gillette perform cranial vault remodeling procedures frequently, and the high volume results in increased success rates with low complication rates.
“Our highly skilled team is among the busiest, most experienced in the Midwest,” Dr. Graupman says. “Our operative times are quicker than at other locations, and our blood-loss rate is much lower. We have performed thousands of these operations without any pediatric deaths. We’re the most mature, experienced program for hundreds of miles in every direction, and we are continuing to refine our technique.”
Unlike in cases of CLP, Dr. Graupman says there’s no need for a prenatal referral for cases of craniosynostosis. Instead, pediatricians are encouraged to send patients a month or two after birth for an initial visit.
“People should enjoy the baby a couple of weeks at home before they begin getting everything analyzed,” he says. “There’s no immediate rush. We schedule surgery for 3 to 9 months, depending on the condition.”
In some cases, infants may have an overarching syndrome, such as Apert syndrome, that involves craniosynostosis, CLP, and other abnormalities and developmental problems. In those cases, Gillette specialists work together to coordinate a comprehensive treatment plan, integrating disciplines from pediatric neurosurgery to social work, to give the child the therapies and additional support he or she needs from birth through adulthood.
Creative Engineering: CranioCaps
Gillette has engineered a custom orthosis, the CranioCap®, for cases of plagiocephaly caused by external forces. First worn when patients are between 4 and 6 months old, the CranioCap® is uniquely fitted for each patient following evaluation by a craniofacial specialist. Over the next two to three months, as the head grows, the skull molds to the shape of the CranioCap®, restoring its roundness.
As always at Gillette, correction of deformational plagiocephaly is a team effort, with the craniofacial nurse practitioners navigating the family through the process.
“For babies with plagiocephaly and torticollis, we work closely with physical therapy and orthotics,” Bucka says. “We wouldn’t be who we are without them.”
Patients Near and Far
As Dr. Graupman says, Gillette houses the most experienced craniofacial program for “hundreds of miles in any direction.” But the distances don’t prevent Gillette’s physicians from creating warm, long-term relationships with patients, families and colleagues across the five states.
“We build strong community relationships,” Dr. Barta says. “Pediatricians can reach out to us any time by phone or email. Dr. Lacey and I are constantly doing outreach, going out and meeting pediatricians and educating them about how we manage our patients and things they can do early on to help. We try our best to be really available to referring pediatricians and to the community.”
Visit gillettechildrens.org/conditions-care/craniofacial-and-plastic-surgery to learn more.