A few hours after the birth of our beautiful daughter we knew that something just wasn’t “quite” right, but we couldn’t put our fingers on it, and the doctors were no help at all. “It will round out”, they said. The shape of her head was just “off” in that she had a rather large “bulge” over her left eye, which she rarely ever opened, along with a pretty bad head tilt. She also had some webbed toes on each foot, which nobody else in our family has.
A few weeks later we were in the doctors office because of an eye infection she had in her left eye and I told the pediatrician that I was still concerned about the shape of her head. Shouldn’t it have rounded out by now? They had told us that the weird shape was because of her fast delivery and that it should round out. Thankfully the pediatrician agreed with me and immediately referred us to the only genetics doctor in our area. We met with him a long three weeks later and he ordered the CT scan. A week later our baby girl was diagnosed with Right Coronal Craniosynostosis. A pretty quick and early diagnosis for the cranio world. Let the craziness begin! We began our journey by first being referred to the University of Minnesota, but due to an administrative strike, we were unable to be seen in the time frame needed so we were switched over to Childrens in Minneapolis.
We first met with our neurosurgeon and then the plastic surgeon. We all “clicked” immediately and believe it or not, they both really eased my mind a bit about what our baby was going to have to go through. To them, this was a rather “routine” procedure and the statistics for a positive outcome were extremely high. In November of 2007 she had her CVR. What a long long day that was. I remember handing her to the nurse and wiping away the tears. I wouldn’t get to hold my precious baby girl for almost two days! She spent her first night after surgery in the NICU and the rest of her five day stay on the surgical recovery floor. Those five long days were such a whirlwind of emotions and almost surreal. My husband and I just couldn’t believe that our family was going through this or that it was happening to our baby. Her eyes quickly swelled shut on day two and stayed swollen until the morning we left the hospital. I remember when she first “peeked” the left one open. Her surgeons and I had made a friendly little bet about when she would “peak-a-boo” them open. I won! She soon spotted Mommy, started “babbling”, and wouldn’t stop for almost twenty minutes. Music to our ears.
Less than a week later she was back to her old self. But that was not the end. More like the beginning. We had genetic testing done and she was soon diagnosed with Muenke syndrome. This is what caused the cranio and came along with a few, very manageable, things that we needed to follow up on.
During the next several years following surgery, she was followed by ENT’s, eye doctors, physical therapists, and early intervention teachers from our local school district. She had several other surgeries, as well. One for her ears and another to repair the strabismus in her right eye (which immediately repaired the head tilt). Those surgeries were a piece of cake compared to the first one. There was definitely light at the end of the tunnel. She is now just about to turn six years old and may possibly need one more surgery to fill in where some bone did not grow after surgery and to make a few other minor “corrections”. But we will cross that road when we get there. She is no longer seen by anyone other than with her plastic surgeon every two years. She has always been a bit behind developmentally, but because of the early intervention she received, will be starting Kindergarten in the Fall of 2013 and is right where she should be. We couldn’t be more proud of our daughter and look forward to all of the great adventures that lie ahead.