Monday, October 28, 2019

Team Care for Individuals Born With Craniofacial Conditions

Editor's Note: Craniofacial conditions do not just affect the face and appearance. No, they go much deeper. This post by Liz Griffin Cox, mother to a daughter with Pfeiffer syndrome makes it clear that it takes a village to care for her child. Team care is the standard that many hospitals that care for kids with facial differencces strive for. Some, like the ones in Boston, have done an excellent job of making it work. The American Craniofacial and Cleft Palate Association (ACPA) has a list teams and providers which their medical advisory board assessed and deem to meet specific, rigorous requirements. We share that list on our website in the spirit of collaboration. Learn more here at with their permission. 

By Liz Cox

What do they say? "Team Work Makes The Dream Work," right?

Well, when we are talking about the medical care for a person with a craniofacial condition, Team Work means everything. Where we receive care, our standard appointment with our "Team" includes at least one member from each of the following disciplines:

  • Plastic Surgery (in charge of reconstruction- this is not your average boob and nose guy either- these surgeons have decades of training in pediatric craniofacial reconstructions)
  • Neurosurgery (anything going near the brain, and neurosurgery is there- this includes craniotomies, shunts, chiari decompressions, etc)
  • Maxillofacial Surgery (these are the folks that work magic from the upper jaw to the eye orbit area)
  • Dental (there can be significant dental issues with craniofacial patients, when you have less space for growth, it doesn't mean you have less teeth. think about that one for a second)
  • Orthodontics (see above- moving around teeth and or expanding palates is pretty common).

And then there's our specialists we see outside of the Craniofacial Clinic...

  • ENT (2-4 times a year, for basic trach management in our case)
  • Pulmonologist (again, thinking about all those upper airway issues)
  • Ophthalmologist (not just for routine eye exams, the eyes are a visible gateway to check intracranial pressure, as it often manifests on the optic nerve)
  • Audiology
  • Orthopedics (in my daughter's case, she has additional syndrome related fusions in her neck, back and arms, hands, and feet and bonus progressive scoliosis)
  • Orthotist- makes and maintains that awesome scoliosis brace to try and keep our curvy girl on the straight and narrow. Well, her back anyways.

The thing about a team like this is they need to work cohesively, they need to understand the role each member has, how it works within the diagnosis, and how to look at the WHOLE patient. Teams like this aren't available everywhere, and good teams like this are hard to find. Most folks have to travel for quality care (unless you happen to have a well qualified team close by, which is rare, but it happens). It takes a lot of time and energy doing the appointment shuffle, and we spend a lot of time in the car going back and forth. There are lots of days of school and social events we miss as a result. We are extremely lucky to only be two hours away from our Team. We have many friends that travel across the country for the quality of care that their child needs. We do our best to make the most of our "bonus time" in the car and play lots of games and listen to lots of music (along with the obligatory school work)." 

Thank you Liz for your powerful words. If you need help accessing team care, we can get you there! We provide travel assistance to patients and their families that require specialists that may be far from their hometown. Gas money, plane tickets, train, and hotel costs are available if cheaper housing or a Ronald MacDonald house is not near by. please contact us at [email protected]

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