Noah – Metopic

NOAHNoah seemed to be your typical healthy baby. There were times during his first year of life I thought his head shape was odd. However, I watched the doctor run her fingers over his skull to feel sutures, so I never mentioned anything. We figured that was just Noah’s head shape. He was perfect to us! Our doctor was on maternity leave, so we saw a different doctor in the practice for his one year well baby exam. I was prepared for a lead blood draw and immunizations, I was not prepared for a referral to neurosurgery. We left feeling pretty angry and in denial that our son needed surgery for Metopic Craniosynostosis. It took a long time to get a referral and appointment, so at 14 months we finally had a consultation with the Cranial-Facial team at Children’s Hospital. The appointment and CT confirmed our fears, Noah would need surgery to correct the Metopic suture.  It took another 4 months to get a surgery date.  On January 17, 2014 at 18 months old, Noah had CVR/FOA for Metopic. We stayed in the hospital for 4 nights due to excessive swelling. I remember even through the swelling, bandages, and tubes thinking he was the most beautiful thing I had ever seen! Finally, we were able to go home on January 22, 2014. His recovery was incredible. He went from being absolutely miserable, clingy, and unable to see to coming home and running around the house and trying to jump on the trampoline.  At his six month check up he looked like himself. The swelling was completely gone and his hair had grown back. Most people would never know he had surgery. We just celebrated his one year Cranio-anniversary. This check up was not the check-up we were hoping for. But by looking at his forehead, we expected the news- a second surgery. The doctor described it as “irregularities” of the forehead. Noah doesn’t have a smooth round forehead anymore. It is rather lumpy and bumpy. His temples also look like they are sinking in, which is a common complication of CVR/FOA for metopic. The doctor said he wanted to wait until Noah was 4-5 years old and he would preform a surgery to smooth the forehead. A much easier surgery than the CVR/FOA, but we still have the same worries and dread. A 2 year wait for a surgery date, and the same surgical approach means the same incision, scar, and shaving his head once again. I know most Cranio-Kids have multiple surgeries and this is common. It doesn’t make it any easier. We are very thankful God has blessed us with this very special little boy! He is 2.5 years old, and the biggest joy in our lives. He is bright, funny, loving, and all toddler boy! Even though his Cranio journey is not over, we know how tough he is, and will always be the handsome son we love! Thank you Cranio Care Bears for your support of all Cranio Moms and Dads out there! You guys are amazing!

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