In honor of our”cranio baby’s” second birthday, I thought I would submit a story about her. She was my seventh pregnancy (five miscarriages and the most recent one being at 19 weeks we were terrified) and it was a high-risk pregnancy. I was on bed rest for 10 weeks with a toddler at home (thankful for family and friends that helped us). After an emergency C-section and her admission to the NICU (for reasons unrelated to the craniosynostosis)….it was all a blur, except I remember them talking about the
shape of her head. It was “football shaped” the doctors said. We could feel the “ridge” of bone (saggital) and were very concerned. After all the explanation of surgeries and risks, we decided endoscopic repair would be our best option…. She had the surgery around three months old. My husband and I were very scared. The surgery went great and she wore her helmet for about one year. Her head still has a odd “bump” on top where her top scar is, but the surgeon assures us it is harmless. They think it might be because we were advised to take her out of her helmet after about 6 months and that possibly was too early. She then wore her helmet again for about 6 more months. After our struggle with having children, we feel God has blessed us beyond words. Before we knew anything about my high-risk pregnancy, her NICU stay or even her craniosynositosis…we knew “Hope” was the name for her. We still feel it fits her just right.
We love the cranio care bears website and facebook page! Thanks for hearing our story!
Jonathan, Elaine, Olivia and Hope – Illinois