How to Choose a Plastic and Reconstructive Surgery Program For Craniofacial Conditions: A Guide for Parents
If you are looking for a plastic and reconstructive surgery program to treat your child’s craniofacial difference — whether the issue is routine or rare — there are several factors to take into consideration. We at Children’s Hospital of Philadelphia’s Division of Plastic, Reconstructive and Oral Surgery want to make sure that every family has the resources they need to make an informed decision about their child’s care. Here is a list of questions to ask potential providers to help you make the best care choice and the reasons they are important.
How many craniofacial surgeries did you perform last year? For how many years have you been performing craniofacial surgery?
Surgeons who perform craniofacial surgery at least weekly are skilled in the details of the procedures and are able to tailor their practice based on hundreds of previous procedures. In addition, a craniofacial surgeon who regularly performs reconstruction on this age group will be able to best advise your family on multiple surgical options. Each child born with a craniofacial difference has a unique set of needs, and the treatment plan should be tailored to meet these needs. For example, there are four commonly performed surgical options to treat children diagnosed with sagittal craniosynostosis: (1) craniotomy and helmeting, (2) spring mediated cranial vault expansion, (3) staged cranial vault expansion, and (4) whole vault expansion. Your family deserves a surgeon who has experience with all the available options and can then recommend and safely perform the procedure that best suits your child.
How many craniofacial surgeries were performed in your hospital last year? Do all members of your care team have experience with the specific issues that can arise with craniofacial surgery?
While the skill and experience of a craniofacial surgeon is important, equally important is the skill and experience of the other team members. Many children with craniofacial differences have airway changes that can make administering anesthesia more difficult. You want a pediatric anesthesiologist who has experience with difficult airways and is prepared with fiber optic equipment should it be needed. The nurses on the surgical floor must be knowledgeable about potential complications and able to recognize any postoperative concerns that the surgical team needs to be aware of.
Are you a member of the International Society of Craniofacial Surgeons? Have you published on the surgical care of children with craniofacial differences?
The field of craniofacial surgery is constantly evolving. The international craniofacial community is committed to sharing with other surgeons their successes and — equally important — any failures. You want a surgeon who has not only heard of a new surgical technique, but also has learned about it from one of the pioneers and knows when it should be used. New techniques, such as computer- aided planning and distraction osteogenesis, have helped improve outcomes and safety. Your child needs a surgeon who is on the forefront of what is exciting and new in the field.
Does the hospital have a specialized delivery unit for children with craniofacial conditions that are identified prenatally? If not, what would happen if my child needed specialized pediatric care immediately after delivery?
Newborn children with craniofacial conditions need close monitoring for airway concerns and feeding difficulties. For children who are identified prenatally as medically complex, one of the safest places for delivery is a specialized delivery unit within a pediatric hospital. This eliminates the need to transport the newborn child to a pediatric medical center. Your child should have access to pediatric specialists from the moment they enter the world!
What other types of healthcare providers make up the craniofacial team? How do you communicate about a child’s care plan?
Because craniofacial conditions have an impact on many different facial areas and functions, specialists from a variety of disciplines are needed to address your child’s complex needs. These include pediatric plastic surgeons, neonatologists, advanced nurse practitioners, speech and language specialists, pediatricians, geneticists, audiologists, ophthalmologists, otolaryngologists, psychologists and social workers. It is important for all team members to communicate frequently as one procedure can significantly impact other care. For example, if a child has a type of permanent hearing device surgically implanted, the child may no longer be a candidate for a specific type of ear reconstruction. You need a team where otolaryngology works with plastic surgery to ensure surgeries are done in the optimal order.
How accessible is your team if I have a concern and want my child to be seen? Are you set up to do telehealth visits?
The craniofacial team you choose will be with you for many years and should be available to answer questions and provide advice. The use of technology — either through sending pictures and videos via the child’s electronic record or via telehealth video visits — is important for families who don’t live near the surgeon’s office. You deserve a surgical team that can readily answer any questions and see your child on the same day if an urgent visit is needed. A team’s dedication to communication may be measured by how easily that team can be reached, and some teams, such as ours, have dedicated nurse navigators who can help families reach the team in times of need.
Can you recommend any support groups for families of children with craniofacial differences? What can you do to help my child feel less alone with this diagnosis?
Because craniofacial conditions are usually easily visible, it is important to support the emotional well-being of the child in addition to offering medical care. Involvement in social events that include children and families with similar challenges can decrease feelings of isolation. Access to a pediatric psychologist familiar with the unique needs of children with visible differences will also be an important resource as your child grows.