My son Levi was born prematurely at 30 6/7 weeks. He spent 54 days in the NICU before he got to discharge home to us!
At that time, we did not know that he had craniosynostosis.
The next morning at his first pediatrician appointment, his doctor suspected craniosynostosis based on his head shape. She referred us to a neurosurgeon at Boston Children’s Hospital. On our first visit, we got x-rays and confirmed a partial sagittal suture involvement.
The neurosurgeon recommended an endoscopic surgery at four months old. As expected, we were very scared. I myself am a Nicu nurse.
Levi grew big and healthy over the next coming months until he was big enough for anesthesia.
We had his surgery in September and Boston Children’s hospital. And immediately were sent to Boston orthotics and prosthetics to be fit for his post-op helmet. He looked so cute! He wore his helmet for 23 out of 24 hours a day. Surprisingly he tolerated it much better than we did! The one hour break would allow for tub time and good cleaning of the helmet.
We went weekly for helmet adjustments. The helmet company was fantastic.
He had such big growth spurts he was quickly ready to be done with his helmet by four months. We were expected to be in his helmet for a year post-op based on his cranial index.
Levi is now five years old, almost 6, and thriving. We see neurosurgery every year on his birthday.
