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Sullivan's Story

I decided to include this page on our blog because so much of our life adventures (and my blog posts about it) are because of Sullivan's Story. Sullivan was diagnosed with epilepsy at birth and craniosynostosis when he was just shy of 3 months old. Sullivan started having rapid and intense seizures within 24 hours of being born.

He spent the first 2 weeks of his life in the Vanderbilt NICU while they tried to get the seizures under control. The doctors told us they could not guarantee what kind of life Sullivan would have due to the damage the seizures in the first 2 days of his life had caused, but we went home hopeful that our beautiful little boy would be just fine.

Within weeks of being discharged the seizures started becoming more frequent again. Sullivan's medications were increased and once again life was "normal" .. except something didn't seem right about his head. It was very elongated and the changes in positioning suggested by his PCP and physical therapist were doing nothing to change it. 

By the time Sullivan was 2 months old there was a visible and tangible ridge running the length of his head- from his nose to his crown. I knew something was very wrong when I tried to find his soft spot and couldn't. At one of his many weight checks I asked Sullivan's pediatrician to once again about his head and to feel his head. The pediatrician confirmed what I had thought, Sullivan didn't have a soft spot. By this time I had already looked up "elongated head, no soft spot" and knew what he was going to say- craniosynostosis. Craniosynostosis is a big word that means the soft spots in his skull had closed prematurely and were causing restricted growth of his brain and skull. Cranio occurs 1 in every 1,500 births although that number is changing every day as more and more people become aware of the condition. We were referred to a neurosurgeon at Vanderbilt that day. 

When Sullivan was 3 months old we met with our neurosurgeon and had a 3D CT scan done. The scan confirmed that Sullivan had saggital cranio, but it also revealed that his metopic suture had prematurely fused as well. Multifusion craniosynostosis only occurs in 2% of cases and is very rare. Surgery was our only answer. As our plastic surgeon, Dr. Kelly, described the process to us it was almost like an out of body experience. He explained that they would open the skull and removed the calcified sutures and reshape the surrounding skull. Dissoluble plates and screws would hold the corrected skull in place.

Sullivan had a cranial facial reconstruction surgery at 5 1/2 months old. If you are interested in the full play by play of his surgery and continued updates of his journey his website is: Here are a few pictures of Sullivan right before and in the week after his surgery.

*The swelling got worse than this, but those pictures are not for the faint of heart. Please email me if you are new to your cranio journey and are interested in more pictures. More are also located on Sullivan's Caring Bridge site. 

He is now several months post op and doing great. Most people would never know his troubles if not for the scar on his head that runs from ear to ear (which is now hardly noticeable). Here is an easy way to look at Sullivan's noggin progress:


Currently, Sullivan's seizures are under control. He has had two clear EEGs since January of this year!

He is on only 1 seizure medication (WOOT!) for the first time since he was born. He is healing great from his surgery; although, we won't know until he is 2 if he will have to have another. He has a few minor gross motor delays but he is getting stronger every day and his prognosis at this point is very positive. He is silly and wonderful and we are thankful for him each and every day!

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