Waiting for the initial consultation can take a toll emotionally. The anticipation, the long nights of internet research, will my baby need surgery, will the doctor see what I see? This is just some of what goes through your mind as you try to understand and accept the possibility of the diagnosis.

There are many questions that are important to ask and they are as follows:

Does my baby need a CT scan? Why or why not?
How long have you been performing Craniosynostosis surgery?
How many Craniosynostosis repairs (specific to your child’s diagnosis)do you treat per year?
Do you work with a Craniofacial Team or with a Neurosurgeon/Plastic surgeon only?
Do you recommend that we see other doctors as well? (Ophthalmologist, ENT, Geneticist etc)
What is the preferred age for surgery?
Why?
How long will it be before my baby’s surgery is scheduled?
How many hours do you predict surgery will take?
Do you think my child will need a blood transfusion?
Can we or should we use direct donation?
Do you give blood transfusion as customary practice?
Do you start blood transfusion as surgery starts?
Why or why not?
Will my child still be intubated when I first see him/her in recovery?
Will my child have a drain left in his/her head after surgery?
Why or why not?
Do you use any blood products or medications prior to surgery?
Why or why not?
What medications or blood products do you use?
Is this FDA approved for use in children?
Please go into detail about the specific repair:
Will you use any artificial bone materials or hydroxyapatite paste?
What type?
How long have you used this technique?
How long have you been using this product (bone paste)?
What is it’s success rate?
Why do you use this Craniosynostosis repair method over (name other) ( strip, endoscopic etc)?
Do you use any type of molding band or protective helmet after surgery?
Why or why not?
Which helmet/CRO brand do you use?
Do you have a specific helmet brand that you prefer? Why?
Do you have a specific Orthotist that you work with?
Why does my baby need a cranial band post op?
***For orbital advancement****
Do you over advance the brow?
Why or why not?
What is your success rate or need for revision with this method?
Will you leave openings or gaps that we must watch in the future?
How long should we expect it to take for the openings to become a solid piece of bone?
What type of incision do you do (straight, zig-zag, in front or behind the ear?
Why?
Will you need to shave my baby’s head?
How long will my baby be in the PICU?
How long will my baby be in the hospital?
Do you do follow up CT scans? How often?
Why or why not?
Will I have to take special precautions with the baby after surgery? What are they?
What sort of follow up will we have?
What is your rate for second surgeries with my baby’s suture type?
Can I have an email address just in case I have more questions after I leave?
Make sure all of your questions are answered – ask until you feel comfortable. It is important that you not feel intimidated and that you not feel rushed. Get answers to your questions. Write EVERYTHING down. Bring somebody with you if you can, the more ears – the better.