A cleft or craniofacial team is one of the biggest factors in helping your child
with PRS. The team is comprised of pediatric specialists who are trained and
have experience in dealing with children with cleft lips, cleft palates and
craniofacial anomalies. These professionals all work together with the common
goal of your child having the best coordinated care possible. There are many
advantages to having a team coordinate your child's care. Many parents live a
number of miles from a pediatric hospital. The team approach allows the parents
to take their child for yearly or bi-annual visits where they see the team
members in one appointment.
We suggest parents choose a team that has extensive experience in treating
children with PRS and other related conditions. Don't be afraid to ask questions
and contact the team prior to asking them to treat your child.
Some typical teams include the following specialists:
Audiologist, Dentist, ENT, Geneticist, Nurse, Ophthalmologist, Oral Surgeon,
Orthodontist, Pediatrician, Plastic Surgeon, Prosthodontist, Psychologist,
Social Worker, Speech-Language Pathologist.
Your child may not necessarily see each member of the team at each visit, they
will see those members that are considered necessary at each team visit. You
might be seeing some of these specialists throughout the year as needed for
appointments and follow ups.
You will want to verify the insurance procedures and coverage with either your
insurance company or a representative of the facility where the team is located.
Some insurance companies require referrals for appointments and some require
authorizations and second opinions for surgery.
General care for your child may be provided by doctors in your local area,
dependent on your distance from the team. It is important that the team
communicates with your local care providers to provide the most appropriate care
for your child. Many pediatricians will refer their patients to other
specialists for specific care.
As a parent, make sure you communicate with the team members and your local
providers to ensure the best care possible for your child. One suggestion is to
make a list of questions for each team member prior to the visit. So often, at
the appointment you forget to ask something and don't want to call back later,
so you sit and wonder about it.
The team will discuss details needed with you after they conclude their
individual exams. Then they also meet together to discuss your child's
appointment and will follow up with a letter summarizing their conclusions.
Make sure you are comfortable with the various members. You will be seeing these
specialists for a number of years and if you are comfortable with them, your
child will sense that and be more at ease.