Scaphocephaly (Saggital) Craniosynostosis - The Techincal Side

Our world has been rocked. One day I am taking Casey in for a doctor appointment regarding his back and before I knew it I was leaving with a referral to a pediatric neurosurgeon. We were sent to Mayo Clinic is Rochester yesterday to meet with a team of doctors to determine if his plates in his head have prematurely fused. As my friend Nicole said, Casey does everything a head of time (including being born) so why would this be any different? We were joking about that on the way to Rochester and telling Casey what a long trip we were going on to be told everything was just fine. Well, it wasn't...

Once we found our building (one of the many Mayo buildings in Rochester), got our car parked and got Casey up to Dr. Clay's office it was less than a minute until he was diagnosed. The doctor walked in the room, looked at Casey and said "Oh here's our Saggital Baby...yup! Any questions about surgery?". Needless to say we were dumbfounded and the doctor mentioned we looked like deer in headlights. Of course we had questions.

What is Saggital Craniosynostosis?
Mayo Clinic's website says "Craniosynostosis is a condition present at birth (congenital) in which one or more of the joints between the bones of your child's skull (sutures) close prematurely, before your child's brain is fully formed. As a result, your child's brain's growth is inhibited and your child's head develops into an abnormal shape" Casey's Saggital plates are the ones that have fused, which makes his head long and narrow as his brain attempts to grow out the back.

(http://www.yoursurgery.com/ProcedureDetails.cfm?BR=4&Proc=79)

How did this happen?
They have no idea, but it happens in 1 in 10,000 babies.

Will this one surgery cure him?
Maybe, he will have many appointments during the next couple years.

Is this genetic?
They are not sure, but Casey will be participating in a study.

Will he need Helmet Therapy?
No, they will use a plate to fuse his skull along with some screws, so no helmet will be needed.

What procedure will be used for the surgery?
The Pi Procedure.

(http://www.yoursurgery.com/ProcedureDetails.cfm?BR=4&Proc=79)



This is the scar it will leave...as seen on a baby from babycenter.com. They zig-zag it to help the hair grow back in a more natural state.

What will the surgery be like?
Mayo Clinic is doing Casey's surgery and their website states:
"The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often performs the surgery.

• Traditional surgery. The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, may take up to seven hours.
• After surgery, your infant remains in the hospital for at least three days. Some temporary facial swelling is common after surgery. Complications are rare. Some children may require a second surgery later because the synostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces.

We have also been told Casey will be brought down 2 days before the surgery for more imaging and blood-typing. With this surgery he will need a full blood transfusion. We were also informed that Casey will be spending a night or two in the ICU. He will be bandaged like a little mummy, his eyes swollen shut for 24-72 hours.

I know I have more questions, not that I can think of them right now. I can't think at all. I feel numb. I do know that Casey is a little fighter. I will keep you updated on our journey through this...keep us in your thoughts, please!