I am writing Ben’s story in the hopes that it will reassure some families out there who have to go through the same thing. Cranio Care Bears website and the listed success stories helped me so much in the time leading up to the surgery. For all the families out there going through this now, just remember that it will pass and you are doing what is best for your child!
Ben was born on July 11, 2013. He was a scheduled C section baby due to a complicated previous C section with my first. This pregnancy was completely different than my first. I had normal blood pressure but severe swelling to the point where I had no feeling left in my hands and my legs. I also had intense pressure and pain for the whole last trimester. I was so worried something was wrong. It was such a relief when Ben was born a healthy baby boy at 8 pounds 10 ounces. He was and is the best, happiest little baby. When the pediatrician examined him for discharge she kept asking if he was breech. She told me she could not feel a soft spot and his head was shaped like a breech baby. The Dr ordered an X-ray right away and results were inconclusive. She then discharged us and referred us to a pediatrician 3 weeks later. Once we met with the pediatrician she ordered a low dose CT scan and our suspicions were confirmed. Ben had saggital craniosynostosis and would require surgery. I cried almost every night, I could not believe that poor little Ben would have to go through such an extreme surgery.
Our neurosurgeon was amazing. He reassured us that Ben would be fine and he typically sees around 6 cases a year. Ben would have a full cranial vault reconstruction. A day before my birthday we got a call that Ben was booked for surgery the following week. I still get that panicked feeling thinking about that call. That was the hardest week of my life I don’t think I would have made it through without my friends and family.
I brought Ben to the hospital on January 28th for admission and we settled into a nice private room. They had a cot there for me to sleep next to his crib. This was where we would spend the next week. We had to bring Ben down to the pre op room and we cut a piece of his hair for his baby book “first haircut” section. The surgery went very well and no transfusion was needed. He spent the night in PICU which is standard for these surgeries. He was on IV morphine and was in alot of pain. He wanted to nurse but kept throwing everything up. The nurses thought the morphine might be causing vomiting so they added the anti-nausea medication zofran to his IV but it did not help. The next day the swelling was starting but luckily it did not get that bad. Only one eye was swollen shut for about 12 hours, his neurosurgeon was even surprised. He was stable enough to be moved out of PICU to his room. The surgical doctor switched Ben to oral Tylenol and oral morphine on demand and the nausea continued. It wasn’t until 5 days after the surgery that he managed to keep his bottles down so they took the IV out at that point. On Day 7 the nurses removed half of the staples and sent us home. We had to get the remaining staples removed a week later. Since then we have had a perfectly happy baby boy. His hair grew back really quick and you can barely see his scar. The only difference is his hair grew back blond and it was black prior to the surgery. Ben will continue to be followed by his neurosurgeon and cranio team until he is 6 years old.