Matthew was born 5 weeks early on April 10, 2012. He was in the NICU for about a week with breathing difficulties and had a CPAP on his head. When we brought him home I noticed his head shape was odd. I thought if was from the CPAP. After all, no one in the NICU or his pediatrician had commented on it or seemed concerned.
A couple of months passed. I could not shake my gut feeling that something wasn’t right. I did some research online and knew immediately Matthew had Sagittal Craniosynostosis. We were prepared for the diagnosis when we met with the Craniofacial Team in Los Angeles when Matthew was 3 months old. The next 4 months were difficult…waiting for his surgery date. I was torn. I didn’t want the day to ever come, yet I couldn’t wait for it to get here so we could put this behind us.
Everyone told me how resilient babies are and that Matthew would be the same way. Having been told that over and over, I still was truly amazed by my little boy. The most difficult part of this journey was when they took Matthew away from us for his surgery and then waiting, for what seemed like forever, for the surgeons to come out and tell us he was okay. I felt so helpless. All I could do was have faith and pray.
It’s been 2 weeks since Matthew had his CVR. He is back to his happy, silly self and I feel truly blessed. I am so glad I found Cranio Care Bears. Reading the stories of other families that got through this, gave me comfort. Knowledge, support, and of course lots of prayers were what helped the most. Thanks for all you do to support families.