I noticed Matthew’s elongated head at approximately two months but everyone assured me, “babies have funny shaped heads.” The nagging feeling just kept growing, but everyone kept reassuring me, that as a first time mother, I was just being hyper.
At Matthew’s four-month check-up, I asked the doctor about the “egg” shape and growing bump on the top of his head. The pediatrician told me it was probably nothing to worry about, but to be on the safe side, he ordered an X-Ray and an Ultrasound. My worst fears were confirmed when a few days after the X-Ray, I received the call that Matthew had craniosynostosis and we needed to make an appointment with the neurosurgery team at Children’s Hospital of Philadelphia right away.
Matthew was scheduled for surgery two weeks later and he came out of surgery a completely different little boy – not only did he look different – he went in with a long, egg shaped head and came out with a round, baby face, and more energy! Matthew went from sleeping most of the day to being awake most of the day. He went from barely being able to hold his head up to now holding his head and looking all around. There was a new world just ready for him to explore!
When Matt was first diagnosed, I was completely overwhelmed. There was so much information on the internet – none of it positive – about craniosynostosis. There were horrific pictures and scary stories of developmental delays and other debilitating and life-long side effects of cranio… that was until I found CranioCareBears.org. Your website gave me hope that not only was Matt going to make it through this surgery, but we were too. I read the success stories over and over again. I hung his prayer chain over his crib at the hospital and it now hangs over his crib at home. I cried when I realized how many people were supporting us the day before his surgery, thanks to the Facebook blast. The care package not only sustained us, but gave us great ideas of what to pack for our stay at the hospital. We know the prayers sustained and raised us up during his surgery and post-operative hospital stay.
We proudly wear our Cranio Mom and Got Stitches shirts and as soon as Matt is able to wear onesies again, he’ll be wearing his cranio onesies. What I thought was a life sentence is merely going to be a footnote in his life story. Thank you Cranio Care Bears for seeing us through this trying time. You are truly angels sent from heaven!