Finn's Diagnosis

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I know a lot of blogs are used to keep the masses updated and I hope this blog will do that. But I also hope it provides more. In the 2 short weeks since we've received Finn's diagnosis, I have found myself scouring the web for other moms like me. Moms who have been there and can shed some light on what is still to come. Now that I have come to terms with Finn's diagnosis, I truly believe my newest role in life is to help others dealing with the same fears and emotions that we are.

Rather than write out the whole story, here is a timeline of Finn's journey thus far:

• July 11, 2013 - 9 month well visit. Pediatrician expresses concern about Finn's head size.
• Wednesday, September 18th - Cranial Ultrasound and 1st appointment with neurologist at Children's Healthcare of Atlanta - Scottish Rite (*Yes we waited 2.5 months for an appointment. Immediately sent back to hospital for X-rays. Neurologist said his head size was normal but was suspicious of sagittal synostosis because his head SHAPE was worrisome.
• Thursday, September 19th - X-rays confirmed neurologists suspicion and he wants to send us to see the plastic surgeon that he works with for another opinion.
• Thursday, September 26th - Meeting with plastic surgeon who advises us to operate.
• Friday, September 27th - Follow up call with neurologist to discuss plastic surgeon's thoughts. All parties agreed a CT scan is the next step.
• Tuesday, October 1st - CT scan at CHOA and appointment with neurologist immediately following. Scans show Finn has a total fusion of the sagittal suture.

There were many days of worrying and waiting in between but those are the facts. 

Speaking of facts. We've learned a lot in the last few weeks. More than I ever thought I would know about the human skull. To help those reading that aren't going through this, here is some information on craniosynostosis:

What is Craniosynostosis?

At birth the skull is made up of multiple bones held together by seams called sutures. The sutures should remain open as long as the brain continues to grow, enabling the skull to expand and properly accommodate the brain's growth. Craniosynostosis is a congenital anomaly caused by early closure of one or more of these sutures, resulting in limited or distorted head grown. 

Sagittal synostosis (Finn's type)

This is the most common type of craniosynostosis. The sagittal suture is located between the anterior fontanelle and the posterior fontanelle. Early closure of this suture results in scaphocephaly, which literally means "boat shaped head." Infants will often have a protruding forehead, an elongated head, and a bony protuberance at the back of the skull.

Below is a side by side of a normal skull (left) and Finn's CT scan showing the fused suture (right.)

The next images show his protruding forehead and elongated head shape. Two of the characteristics mentioned above. 

We are fortunate that Finn has not suffered developmentally thus far. Evidence does not show any signs of intercranial pressure (ICP) either. However our fear, as well as the doctors', is the chance that pressure could develop as his brain continues to grow. At 1 year, his brain has only reached 60% of its maximum size. With 40% more growth to do, we want to make sure there is room for it!

This brings us to present day! Juggling the neurologist's schedule and the plastic surgeon's, as well as ours and the hospitals is no easy feat. We were hoping to have the surgery done before the end of the month (Even if that meant trick or treating in the hospital) but no such luck. Surgery is scheduled for Tuesday, November 12th at 8:30am. Finn will have what the cranio world calls a CVR (cranial vault remodeling.) Do you lose your stomach when you read that like I did? He will be in the PICU for one night followed by 2 or 3 additional days in the hospital.  They will not be shaving his head. I am happy about this since it will help mask the scar. But I would be lying if I said I wasn't excited to see him with a buzz cut for a change. He's had a wildly full head of hair since birth (just like his mommy!) 

Every doctor and parent that we have spoken to mentions how quickly these little fighters bounce back after surgery. We are all certain Finn will do the same. I believe them when they say it's usually harder on the parents! It will be a long 5 weeks of waiting but luckily we are busy with weddings, birthdays and a trip to Ireland to pass the time. Our neurologist assured us that there is no risk in waiting to perform the procedure and we are comforted in knowing that waiting only means he will get both of their undivided attention.

Thank you again for reading and joining us in this scary, life changing adventure. 

“Every heartache will fade away just like every storm runs out of rain.”