Our story began on 7/13/2011 when our Princess Sydney Marie was born. We didn’t find out the sex of the baby this time around so we were thrilled to hear it was a girl since we had our son, Anthony. Sydney was perfect, except she had somewhat of a misshapen head but we were told that it was just due to her position inside of me and it would correct itself in time. I had a c-section with both children due to a mass in my brainstem so it wasn’t due to giving birth naturally. Let me back up some- 30 years ago I had surgery at U of M Children’s Hospital in Ann Arbor, Mi because I had Craniosynostosis with the right Coronal suture being fused. All of our Dr.’s new this from the OBGYN to the Pediatrician but for 4 months they kept telling us that Sydney’s deformity would correct itself. They had us in to see about getting a helmet fitted for her, etc.
Finally I switched doctors and was able to get him to call U of M to look up my records and with that he ordered a CT Scan and 4 hours later that evening we learned Princess Sydney did in fact have Craniosynostosis with the Right Coronal suture being fused! It took 2 months to get in to U of M for the initial appointments and from there it was determined that surgery would take place in 4.5 months from that point. It was a long waiting game and the anxiety I felt was indescribable! After several appointments for blood work, developmental testing, Physical Therapy for Torticollis, etc… the surgery day came- May 16, 2012. Sydney was 10 months old.
I will never forget those feelings we had the evening before and morning of the surgery. It had to be the worst days of my life or so I felt at that very moment. When I had to hand Sydney over to the doctors to take her back for surgery as she was smiling at both Daddy and I, I felt like a monster! The guilt overwhelmed me! I sat there and cried what seemed like forever but then a sense of calm came over me and in to the waiting room we went. We had over 10 family members there with us that day, and 8 hours later the doctors called us to the recovery room to see Sydney. The surgery couldn’t have gone better they told us but she did end up having to get a blood transfusion. The first time I saw Sydney after surgery I thought I might lose control once again but I knew we had made it through the worst of it and this too shall pass. Sydney was in ICU for about 24 hours and then was moved into a regular room. The surgery took place on Wednesday and we went home by Sunday afternoon! Her eyes swelled shut and both did not open for almost 2 weeks. When we brought her home Sunday, she tore her room apart as she missed all of her toys! She crawled everywhere, stood herself up on everything, ate like a piggy. You would never have known she had the surgery if it wasn’t for her appearance!
U of M CS Mott Children’s Hospital was amazing and wonderful even down to the people who came in to clean the rooms. They were all very compassionate and treated Sydney as if they knew her personally. Dr. Buchman-Plastic Surgeon and Dr. Muraszko-Neurosurgeon who performed the surgery are both outstanding doctors and I can’t thank them enough for getting Sydney to the other side safely! We are 6 weeks post surgery at this point and her hair has almost grown all the way back. Her scar is barely visible unless you are up close and she says and does more now than before surgery as if she feels better. Her sleep patterns were back to normal 2 weeks post surgery as well. She’s a fighter and one tough girl! I am so proud of her and I know that she’ll be able to conquer anything in life now that she’s gotten through this so well! These kids are all so strong and amazing- they don’t know how to be any different! It’s tougher on us as parents! We are now doing Genetic Testing and waiting to hear back from Johns Hopkins on the results since I was also born with Craniosynostosis. What really surprised and scared me was the lack of education regarding this issue in our medical field! Sydney’s original doctors blew this off for 4 months and it could have gone on much longer if I hadn’t switched doctors and pushed the issue. You are the best advocate for your child and if you feel something is wrong, do not stop until you have all of the answers! I have made some amazing friends throughout all of this as well through Cranio Care Bears and the Posada Foundation. They helped me stay strong and prepared me for her surgery the best they could. They sent care packages, e-mails, phone calls, cards, etc.. If I can pay this forward in anyway and share Sydney’s story to help others I would love to! Thank you for this opportunity to share my story. More pictures can be viewed on my Facebook Page- Angie Solinski.