Around 4 months old, we realized something was not right with the shape of our sweet baby boy’s head. His forehead sort of popped out just a bit and by looking down on the top of his head it was more triangular in shape rather than circular. Our pediatrician at the time called for X-Rays, as she wanted to confirm that the bones were growing properly. Immediately, I panicked wondering what could possibly be wrong with my already perfect child? The pediatrician said they would be checking for a form of Craniosynotosis. I made her repeat that long scary word, as I couldn’t even comprehend what she was saying.
After the X-rays, we raced home so I could get online. Right away, I found that word “Craniosynotosis” which is a birth defect in which one or more of the joints between the bones of your infant’s skull close prematurely, before your infant’s brain is fully formed. When your baby has Craniosynostosis, his or her brain can’t grow in its natural shape and the head is misshapen. There were different types of cranio and I felt Kanon’s case was known as Metopic Craniosynostosis (trigonocephaly). The metopic suture runs from your baby’s nose to the sagittal suture. Premature fusion gives the scalp a triangular appearance. It was overwhelming and terrifying reading about all of these babies and children and seeing their surgery pictures. Instantly, my gut was telling me that this is exactly what Kanon had. I was an emotional mess! Shortly after reading anything I could get my hands on about this, we heard from the doctor office telling us that Kanon was fine and no need to worry – “that all his bones in his head are growing properly.” I was not okay with this answer as I knew there was something wrong and we needed another opinion. We got a referral from his doctor to go to a well-known hospital in Iowa for a second opinion. This experience was awful and the physician assistant that saw Kanon treated us like a number and claimed, “he is fine.” The doctor was on vacation this day so I am not sure why they chose to set up the appointment in the first place. She took a few measurements and pictures of Kanon’s face and head and said she would call us sometime after she spoke with the doctor. Once again, we left feeling uneasy and not impressed. The next day, she called me and said, “The doctor agrees with me that Kanon will need the corrective surgery.” I about lost it as she completely changed her story and were able to call for surgery without the doctor even seeing Kanon for a visit! Due to unprofessionalism, we decided to make the call to Mayo Clinic in Rochester, MN for a 3rd opinion.
From the initial phone call to Mayo, I knew in my heart this was the place God was leading us to go to! They were so kind and did not ask for a referral and got Kanon in within a couple of weeks. At this point, my husband and I accepted that we would need to get Kanon the corrective skull reconstructive surgery but we just needed one thing… doctors to be on the same page! As soon as the doctors and nurses came in, they diagnosed him with Metopic Craniosynotosis (mild to severe). Thank you LORD! We just wanted the best for Kanon and so we continued on and on! Sometimes doctors miss things but as the parents, we always know what is best. With determination to get more opinions, we were able to get the corrective surgery before the 1 year of age mark, hoping to better the developmental aspect of Kanon’s life.
Surgery day: One of the longest days of my life! Kanon was the first one to go back and the last one to be done. We witnessed the waiting room wave through people all day long. The moment we were able to go and see him was the best feeling in the world! I didn’t know what he would look like but when I saw him for the first time in recovery, I just could not help but cry and cry! It is so hard to see your helpless baby look as if they are in pain from an incision zig-zagging from ear to ear on the top of his head and all of the scary tubes covering his body. Immediately, I thought, what have I done?? How can I take his place right now?? The doctors were helpful in getting my mind right and reminding me that this is the best for Kanon.
The hospital stay was not the easiest experience but with the gracious support of our parents, family and friends we made it through it all. The wonderful team of doctors and nurses also played the biggest role in taking care of our baby! One of the greatest things I can say from it all was that there is such thing as power of prayer! This photo is 2 weeks post-op of Kanon and he was cheering on his favorite college team, the UNI Panthers!
We are now at almost 5 months post-op and the doctors are very impressed at each follow-up appointment and Kanon acts like nothing ever happened. I may be a biased mommy by saying this, but I believe he receives the happiest baby in the world award!
Thank you Cranio Care Bears for your amazing organization and sending out care packages to families all over the world going through this hard time of their child undergoing such a procedure! You are truly blessings, as I will always remember the day of receiving your care package filled with goodies and the outside of the box covered with the saying, “Prayers for Kanon”!
My family will always continue to help out your organization!!!
Tasha, Kyle, Dade & Kanon D. – Iowa