My daughter, Machaela, was born on Groundhog Day in 2007. She was diagnosed with Craniosynostosis on the 2nd day, needless to say, my family and I were very confused because we’d never heard of it. I remember the specialist coming into talk to me and my parents. She explained that Machaela had cranio and that we should seek out a NS and PS, so we did. We took her to John Hopkins Hospital in Baltimore, MD.
We met with Drs. Jallo and Simmons and planned her first cranio surgery, which was a craniectomy. She had the surgery at 5 weeks old and wore a helmet for the next 9 months. When she was 10 months old, the PS said that she’d need the 2nd, more invasive surgery, the CVR/FOA. At 11 months old, we took her back to JHH and she underwent the second surgery. It was a total success! We were thrilled! Then at 18 months old, Machaela started wearing glasses, for her left eye isn’t as strong as the right one. She is 6 years old now, and 6 yrs post op! She continues to wear glasses and we are praying she won’t need surgery on her eye! This is Machaela and her dog, Levi!