Brentley Ehmann

Type of Craniosynostosis: Frontosphenoidal (6th case in the world but similar in appearance as coronal)
Contact: Summer@CranioCareBears.org

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 went to be Jesus on 4/26/22. 

He was my motivation to make this page 💜