Hannah’s birth almost happened in the car. A mere 9 minutes after arriving at the hospital she was in my arms! She was a firecracker from day one! We all noticed right away that she had a strangely shaped head, but her birth was rather fast, so we all presumed it would round out over time.
However, even by her 4 month well check, her head was not rounding out. Her forehead and eyes were uneven and she was having difficulty visually tracking objects partly due to the alignment problems she had with her eyes. The pediatrician wasn’t concerned with her head shape, saying that it was likely just due to the way she positioned her head while sleeping. But, her eyes needed to be checked, because by 4 months she should have been tracking objects. We were sent to Dr. Julie Nam, a pediatric ophthalmologist and strabismus surgeon. It was at her first appointment with Dr. Nam that we were introduced to the term Craniosynostosis. She stated that being an eye doctor, she couldn’t officially diagnose the skull disorder, but that she has seen many kids over the years and felt that Hannah had enough features that were associated with Right Coronal Craniosynostosis that she wanted her to see a craniofacial surgeon to rule it out.
Dr. Nam referred us to Dr. David Staffenberg. Dr. Staffenberg said immediately that Hannah had read the textbook on Rt. Coronal Craniosynostosis. Everything about her posture to her facial features and skull structure was textbook to the diagnosis. Dr. Staffenberg said that he wanted to wait until Hannah was about 8 months old because the bones would be a better texture at that point. Four VERY long months we waited trying to keep our cool until the surgery. In hind sight, the waiting was the hardest part!
Finally, March 5, 2012 in the evening we were admitted to NYU Langone Medical Center. Hannah has a metabolic disorder (SCAD-Short Chain Acyl-CoA Dehydrogenase Deficiency) that makes it unsafe for her to fast. So she was hooked up to a glucose IV overnight before surgery. The surgery called a Cranial Vault Reconstruction and Frontal Orbital Advancement (CVR/FOA) was performed on March 6th, 2013 by a pediatric neurosurgeon – Dr. Howard Weiner and a cranio- facial plastic surgeon – Dr. David Staffenberg. The surgery lasted 5 hours and I couldn’t believe how relieved I was when Dr. Staffenberg came to say she was doing great. She had gotten a blood transfusion during surgery, but other than that she did perfectly! Her recovery was so fast and easy, it was AMAZING!! She was in the PICU for 24 hours and then a regular room for about 18 hours when her discharge was put through. She had completely stable vital signs her entire hospital stay and was comfortable on regular infant Tylenol.
It took 5 days for the swelling to go down enough to where she could open her eyes again. She was SO excited to see again! It was a wonderful moment in time! Her skull is now looking great. Her eyes are still giving her a bit of trouble which is common in coronal kids- so we are patching her right eye for an hour a day to help strengthen her left eye which has a strong astigmatism and she will be getting glasses in the future. It is now almost 6 months since the surgery and thankfully, Hannah is doing great and unless you knew she had the surgery, you would never guess it! Many thanks to the incredible Dr. Staffenberg and Dr. Weiner for keeping our daughter safe and healthy!