When my son was born, I recall so many people commenting about the perfectly round shape of his head. And it truly was. But at around 2.5 months, I began to notice a tiny ridge in the middle of his forehead. A ridge I would have never noticed except for an incident where a nurse practitioner sent my now 5 year old daughter to a craniofacial doctor when she was 7 months old for a ridge she felt in her head. I went into that appointment terrified. Within 5 minutes, the doctor was assuring me my child was perfect and I had absolutely nothing to be concerned with and he was right. My daughter continued to grow and flourish and by all accounts, she’s pretty perfect. But it was that experience that brought my attention to the tiny ridge in the middle of my newborn son’s head. And at his 4 month check up, I brought it up to his pediatrician. At first he seemed unconcerned. Then about 2 hours later he called me and said he would really feel better if I got an opinion from a specialist. I went to that appointment, on my 38th birthday, with no real concerns. I expected to hear the same thing I had heard the first time I visited that office with my daughter. However, as the seconds progressed to minutes that seemed like hours, perfectly unconcerned was far from how that day would go. The first doctor, a resident, came in and asked me all the questions and left. Then Dr. Vasconez came in and looked at my son and his body language alone was enough to make my heart begin to beat faster and that pit of fear take over. Though he assured me that everything would be fine, he explained to me that my son would need surgery, sooner rather than later and wanted me to consult with a neurosurgeon that day. He personally went to that office down the hall and asked them to see us and then walked us down there. I recall everyone asking if I had questions and I had no questions, mostly because I had no idea what to ask. But I remember feeling so stupid that I had two of the best doctors in the country telling me that my son was going to have cranial surgery and I didn’t ask one question.
By the time Barron actually had his surgery for metopic craniosynostosis on July 21, 2016 at just 7 months old, I had researched every possible website and felt as informed and prepared as one can hope to be in this situation. We spent 6 days at the University of Kentucky Children’s Hospital. His surgery took a little over 7 hours. It consisted of the cranial vault reconstruction but he also had to have orbital advancement to correct where the craniosynostosis had already started pulling his eyes together. He also had a sebaceous nevus (basically a tumor of the hair follicle) removed from the back of his head and his frenulum clipped. That was the longest 7 hours of my life and I’m not sure anything can prepare a mom for the moment they see their tiny baby sedated on a ventilator. All the tubes and wires were just more than I could take. He is a fighter though and within the hour he was off the vent and over the course of the next 12 hours we lost a lot more wires and I was able to hold him more easily. We spent the first 36 hours in the picu before transferring to a regular room in the children’s hospital. They tell you to expect swelling and you should. Barron’s facial swelling was probably more than most due to the orbital portion of his surgery. His eyes were swollen shut for nearly 3 days to point his eyelids were turning inside out. It was scary to be honest. The staff and doctors there were amazing and my little man is just like any other normal little boy now at 17 months old. Some people find it uncomfortable to see the pictures of him at the worst points after surgery. But I think it is necessary to be fully prepared for the experience. And it is just a moment. It all passes and honestly seems like a lifetime ago at this point. The pictures I share are a month prior to surgery, during surgery (from the moment I was allowed to see him and each consecutive day after until we went home) and now 10 months post-op.