John & Andrew Kepler are identical twin boys born 10/6/09. The minute they were born we could tell them apart very easily. John’s head was much rounder, Andrew’s longer and more narrow. The doctors assured us from our first ultrasound at 14 weeks that they were identical twins. They just looked so different while in the NICU. Their heads were shaped so differently. When the boys were a week old, I remember sitting in the NICU holding John and saying to Mike, “John’s face is crooked.” I can still remember how his face looked….it was crooked. Of course the nurse assured me it was fine and it was his hat that was crooked. I took this to be true and never thought about it again.
As time went on, John & Andrew began to look more identical. They both started gaining weight and getting those fat baby cheeks that everyone loves. But in pictures we noticed John had what we thought was a lazy eye. It was his left eye that looked lazy. That was how people could tell them apart in pictures. So when John was 6 months old we took him to a pediatric eye doctor. The doctor said his eye & vision was perfect. He said his eyelid was droopy but with time it should strengthen and get better. Great!!
Three months later, when John & Andrew were 9 months, we noticed some huge changes in John. His head really started to look and feel different. His eyes were looking really close together, his left eye was still very “lazy” and in pictures he just did not look “right” to us. He also had these very, very sharp ridges on top of his head, where his soft spot should have been open. We also noted when John was only 2 months old that his soft spot had closed. Our pediatrician said “sometimes that just happens” and we never thought anything else of it. The ridges on the top of his head really felt like pieces of bone growing on top of each other. Me being a nurse, I just knew it was not right. And then being a mom, my gut told me it definitely was not right.
So at their 9 month appointment our pediatrician assessed both boys. Checked their heart, reflexes, felt their tummies, looked in their ears and even put his hands on their heads feeling their skull. He did not say anything was out of the ordinary. Not until I mentioned something about John’s head and it was not until the end of the appointment! Our pediatrician felt John’s head further and said, “You should go see a pediatric neurologist. It could be a condition called craniosynostosis.” My first thought was, “what did you just say. Cranio..blah, blah, blah blah….” I had no clue what he was talking about but I knew it could be serious. I asked how it was fixed and he said, “major surgery.” I guess major surgery!
On August 9, 2010, we met with a pediatric neurologist. After sitting in his waiting room for almost 2 hours, he took a quick look at John and said, “Yes, I suspect right coronal craniosynostosis. But you will need to get a CT scan to confirm.” That was the scariest moment in my life. There was about a 3 week period in between meeting with our pediatrician and then meeting with the neurosurgeon who told us it was most likely cranio. During that time, I was on the internet almost every waking minute searching craniosynostosis. If you have ever done that, it’s a scary thing because you see the worse case scenarios. So I was having nervous break downs almost weekly. Just thinking about putting John through all of that was unbearable to me. We had the CT scan done on August 11th and that night we found out that John had right coronal cranio
Because Andrew is John’s identical twin brother, we wanted to see if Andrew had cranio. Through a CT scan, it confirmed that Andrew’s sagittal was partially fused. This was in August 2010. By the end of September, his sagittal suture was 100% fused. Andrew is a “wait & see” case and so far his brain is happy and no surgery required!
Our next step was finding out where to go to do the surgery. Our pediatrician did his residency at Seattle Children’s Hospital so we decided to go there because of the good things he had said about that hospital. We had really no clue at all where to go. We had no information about any doctors or who was the best. We just felt that Seattle Children’s was a good fit for us.
So then I really started researching on-line support groups. I was hooked up with a mentor through the Jorge Posada Foundation. She then linked me to www.Craniokids.org. It was here where I found Shelby. She informed me her son also had Dr. Gruss and her son was a sagittal baby. I never would have thought that I could have met a great friend for life through this website.
Looking back on everything, I don’t think I could have made it without Shelby’s support. She helped us get settled in Seattle before surgery. She brought us treats & other needed items for the hospital stay. She was right by our side the entire time John was in surgery. We still keep in touch with each other and are a support to each other from a distance. She has a spiritual sense about her. She is so experienced with the cranio kids and families, she is a great resource for a new cranio family. She is dedicated to making the scariest time in a family’s life a little bit easier. She is a great support to the cranio families.
We are almost 1 year post-op and both John & Andrew are doing great. John is very lumpy & bumpy right now but the nurses & Dr. Gruss assure me this is normal. You would never tell John & Andrew are cranio kids!!