Nicklaus Children's Hospital is home to one of the first and most experienced craniofacial programs in Florida. This long tenure has given the program a head start that pays dividends to patients, families and referring physicians.

“We've had decades to recruit staff across the full range of specialties,” says Jordan Steinberg, MD, PhD, pediatric plastic and craniofacial surgeon and Surgical Director of the Craniofacial Program at Nicklaus Children's Hospital. “Our kids need a lot of specialized care, and having the structure within a single health system to serve those varied needs is a huge bonus.”

A few specialists serving on the craniofacial team include:

• Dentists and subspecialty dental experts
• Feeding and nutrition specialists
• Geneticists
• Otolaryngologists
• Plastic/craniofacial surgeons
• Speech-language pathologists

Together, this multidisciplinary team addresses common and rare craniofacial abnormalities. Of these, cleft lip and palate are among the most common, as approximately 1 in 700 children are born with these conditions.

The Changing Face of Success

As new techniques and technologies improve the patient experience and outcomes, craniofacial surgery continues to evolve. Along with new approaches, the definition of successful interventions has transformed.
Only a few years ago, surgeons defined success exclusively by surgical outcomes that were easily quantified. Today, craniofacial care aims at a slightly different target.

“Success is no longer defined exclusively by the surgeon. Rather, it's defined by the mental well-being and health of the patient and family,” Dr. Steinberg says. “We still consider metrics of whether a lip appears normal or speech meets standards according to speech-language pathologists, but the day-to-day experience as observed by family and friends is as important as these traditional benchmarks.”

This novel definition of success requires new metrics that focus on the patient's confidence and outlook on life. Answers to such questions come through a series of questionnaires given across the continuum of a patient's multidisciplinary follow-up care journey.

Such attention to detail is provided to the hundreds of children, including Jasiah, whose families turn to Nicklaus Children's for craniofacial care each year.

A Premature Start With Cleft Lip and Palate

Diagnosed with bilateral cleft lip and palate in utero, Jasiah had his initial surgery postponed due to prematurity, as he was born at 28 weeks gestation. Dr. Steinberg followed Jasiah throughout his extended post-birth hospitalization and worked with Jasiah's parents while the team prepared for cleft surgeries. Additionally, specialized pediatric orthodontists fit Jasiah for presurgical molding, which Jasiah responded to positively, thereby reducing the surgical burden.

At eight months of age, Jasiah underwent cleft lip repair, followed approximately six months later by clef palate repair. Besides the initial postponement, both procedures went as planned. Thanks to persistent adherence to pre- and post-surgical appointments and the appropriately prescribed treatment, the surgery also had its intended results.

Shortly afterward, Jasiah's eating and speaking abilities improved, enhancing his quality of life and bringing significant comfort and encouragement to his mother. Though successful, these procedures marked the first steps in Jasiah's care. As with other children born with bilateral cleft, Jasiah's treatment regimen will contain additional surgical interventions in the years to come. These may include:

• Bone grafting to support permanent tooth development
• Jaw surgery
• Touch up of the nose

“It can be difficult to predict when and how many additional interventions are needed,” Dr. Steinberg says. “That's why we perform yearly follow-ups.”

A New Paradigm: Less Is More

While it can be difficult to predict the number of interventions Jasiah or any other child will require, the current trend in craniofacial care encourages less frequent interventions. Such an approach conflicts with previous best practices, during which many smaller stages of surgery were proposed throughout the course of childhood.
“We carefully consider risks and benefits for performing a given intervention at a given time,” Dr. Steinberg says. “The goal is to reduce the frequency of surgery for these children to lessen the psychological consequences of spending downtime away from peers, in the operating room and recovering from surgery.”

Nicklaus Children's leads the way in this less-is-more approach when caring for pediatric craniofacial patients. Anecdotally, specialists at other facilities have informed Dr. Steinberg that the craniofacial team at Nicklaus Children's has “made a lot of gains” in this arena compared to other providers. These gains are yet another benefit of the multidisciplinary team at Nicklaus Children's.

Weekly conferences allow each of the specialists to comment on a child's case, presenting opportunities for innovative solutions that meet the proposed end goal with fewer or less invasive interventions and reduced burden on the patient and family.

An initial conference occurs while the family awaits the team's decision. A team member then discusses the outcome of the meeting with the patient's family member. Future meetings are summarized and given to the family in written form.

“We aim to prioritize tasks as if we're the patient's family,” Dr. Steinberg says. “As we plan treatment, we consider what is most important to move forward with at a given time, then give our list of recommendations.”

Empowering Families With Information

Including parents in the process requires a delicate balance. Clinicians must inform parents of potential outcomes in a manner that empowers instead of invoking anxiety. However, Dr. Steinberg notes that research has found that open, quality communication positively affects the journey for families anticipating the birth of a child with cleft lip or palate.

As craniofacial research continues, the journey will evolve, improving life for all children with craniofacial anomalies.

“These conditions touch many children, and they affect the face, which is how we interact with the world,” Dr. Steinberg says. “Those who have been with the program for three or four decades deserve tremendous credit for building and leading the state's oldest, most successful craniofacial team.”