Type of Craniosynostosis: Frontosphenoidal (6th case in the world but similar in appearance as coronal)
Brentley was born 6/28/10. We noticed his head was a little lopsided and we asked the nurses and our pediatrician. We were told it was from the birth and it would “work itself out”. At his 2 mo appt the pediatrician finally ordered a CT scan. We waited patiently and then got the call that he did NOT have Craniosynostosis and it was just positional plagiocephaly. We were so relieved. We made sure he slept on the side they told us to have him sleep for 2 mo straight and it actually got worse. At his 4mo appt they then referred us to a neurosurgeon at Denver Children’s Hospital. We thought they would tell us he needed a helmet. When we went in for our appt they immediately told us he had left coronal synostosis and needed surgery ASAP. We freaked out and I cried so hard. We were so confused because his CT scan at 2mo said he didn’t have it. They said somebody must have made a mistake when reading it. I then hit the internet and found lots of good sites. I started making plans for the surgery and got emotionally ready for the big day. Then one day I popped the CT scan into my computer and started studying his images. He looked like a typical coronal synostosis patient but after comparing his scan with other coronal kids images online I noticed his coronal suture was open!! I immediately called the neurosurgeons and told them to look at his CT Scan ASAP. They called me back and confirmed he did NOT have cranio but was very confused why I looked like a cranio patient. He ordered a 2nd CT. We did that and that radiologist also said he did NOT have cranio. We were so confused and frustrated at this point as I just wanted my son to be ok and live a normal life. A few weeks later (and just a couple weeks before his scheduled surgery) we went in for the follow up with the neurosurgeon and Brentley was finally officially diagnosed with a very rare type of Craniosynostosis called frontosphenoidal synostosis. He was the 6th case in the world! It’s the small suture close to the eye socket. Because it was fused together his head was not growing on the left side causing his brain to push out on the right side of his head. His eye sockets were also very effected and his left eye didn’t open as much as the right. It was bittersweet as we finally had a diagnosis and solution…but knew surgery was back on.
He had a full CVR on 12/21/10 at Denver Children’s Hospital and instantly looked so much better. He is doing AMAZING! His scar has healed wonderfully and he’s reaching all his milestones. He is such a blessing and has brought so much joy to our family I can’t even put it into words. We love him so much! When we first heard he had Craniosynostosis and needed surgery I was devastated. But now that we are on the other side I can honestly say I feel blessed. Craniosynostosis has changed all our lives for the better. I feel honored to mentor new families facing this journey and feel blessed that I can pay it forward.
Brentley’s Blog: http://Craniokids.wordpress.com
Son: Anthony (AJ)
Type of Craniosynostosis: Sagittal
Anthony “AJ” was born on a cold winter day in January 2009. He had a little trouble coming into this world and had to be born emergency C-section. He was perfect! When Anthony was 4 months old we noticed a ridge that ran down the middle of his head. We brought it up to our pediatrician on his well baby check up. He felt the ridge and referred us to Seattle Children’s Hospital’s craniofacial clinic. We saw Dr. Lewis and she right away diagnosed him with Sagittal Craniosynostosis. We were sent for a CT scan and were told he would need surgery to correct this. We were numb. We had never even heard of such a word. We never would have dreamed our baby would need major skull surgery! Then I found Cranio Kids on the web. They saved me. I had such great support from the wonderful ladies on there. They made me feel all would be ok. Anthony underwent a 5 hour surgery on October 6, 2009. We were surrounded by friends and family while at the hospital. We waited anxiously for word. When we got the call that he was out my heart leaped for joy. We rushed down to the PICU to met with the surgeons. Dr. Gruss(PS) and Dr. Ojemann(NS) were waiting to talk to us. They said everything went well. Anthony’s skull was thinning and they said that it was good that they did surgery when they did. We went back to see our baby laying there in the PICU. At first sight I cried. He looked so different. His head was no longer narrow in the front, it was nice and round! Although it was amazing what they had done it was overwhelming to see my baby lying there and not looking like himself. I didn’t hold him for the rest of the day and finally got to the next morning. It was wonderful having him back in my arms. He was in the PICU for 2 days and 2 nights and then a regular room for the next 2 days and 2 nights. He amazed the nurses and doctors with his personality. He barely fussed. He just was content patting my face and snuggling even though he couldn’t open either of his eyes. We went home on day 5. Before we left his sister Kalea joined us to see her brother after being away from him for so long. She was the only one who made him smile the entire stay. We took them for a wagon ride. It was great to see that smile again! Our Anthony was back. After our time at Children’s was over I vowed to never let another family have to go thru this alone. I have since mentored many other families who have gone to Seattle Children’s for cranio surgery. I feel blessed to be able to help these families during this hard and scary time.