Heath-Frontosphenoidal

526Our son, Heath, was born on 10/16/15, a healthy 8 lb baby.  Right after delivery while taking him all in, studying every feature, I noticed a small indentation on his forehead, and a somewhat bulgy eye on the same side.  Everyone noticed it and chalked it up to be from passing through the birth canal or from laying inside me weird.  We left it at that and thought his head would work itself out in the next couple days.

At his one month check up at his pediatrician’s office, his doctor asked if we’ve seen any change or improvement with his head shape. We said no. So she referred us to a neurosurgeon in Columbus, Ohio.
His appointment with the neurosurgeon came. The doctor walked in, said nothing to us, walked right over to Heath and said, “coronal craniosynostosis.  We cut them from ear to ear, rearrange the bones in there, blah blah blah, any questions?”
We were in shock to say the least.  The chief of neurosurgery just told us our son was going to need major surgery.  Everything else was a blur from the shock, but he sent us down to get X-rays.  They told us they’d let us know the results shortly.

Fast forward a couple days later, with no call yet on the results, we call the hospital.  The nurse said the doctor has not reviewed the X-rays yet but will see what the radiology team said.  She calls us back and says Heath’s sutures are all open!!! We were elated, but beyond confused.  The neurosurgeon seemed so confident that he had coronal craniosynostosis, and now nothing?  They told us to just do the ‘wait-and-see’ approach.
We weren’t comfortable with that at all, we wanted a second opinion. We went and saw a craniofacial specialist.  He had a little more bedside manner and explained things better.  He said he wanted more imaging and this time to focus on the eye area more.

Well we got our news: Heath had two very small sutures around his eye that were fused, frontosphenoidal and zygomatic. The blow was a little less this time since we’ve heard that he needed surgery a month earlier but still beyond scared.

Heath’s surgery was scheduled for May 9th.  Leading up to his surgery was awful.  Felt like a constant dark cloud over our heads.  My heart hurt so bad for Heath.

Surgery day came. Had to be at the hospital at 10am, surgery was scheduled for noon.  They called us back to explain the operation once more, nurse looked him over, and then the waiting game until they came and got him.  I didn’t want to say goodbye to him.

Finally it was go time. The nurse let us hold him until the very second she had to take him into the operating room. We said our ‘see you soons’ and ‘I love yous’ and off he went.  That was the hardest part of the whole process, saying good bye and the wait during surgery.

Around 7pm, the nurse came out to us and said the doctors wanted to speak with us. My husband and I jumped out of our seats and headed to a separate room. The doctors came in and said everything went great. A huge weight immediately lifted off our shoulders.  Doctors gave the surgery two thumbs up. The worst was over, we were officially on the other side.

Recovery was tough at times, but we had our baby back. We were able to hold and kiss him, and he looked so good.  Kids are amazing at how resilient they are.  Heath’s now home, a week and half after surgery and he’s smiling, talking, and playing. What helped us through this process was reading other success stories on Cranio Care Bears, thank you SO much for the support.  You will be amazed at your Cranio Warrior.  Can’t wait until you all can say, “We’re on the other side.”  :)

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