Rocco Sullivan Gambone was born on July 10, 2012 at 12:54 am. He was born naturally and without complication at 41 weeks, weighing in at 7lb 14oz. As his mother, I had a completely normal pregnancy – I actually enjoyed it being my first pregnancy and at 32 years old, had no health issues during the entire term. When Rocco was born, we noticed (and it is evident in his newborn pictures) that one eye was open and the other closed. We jokingly kept calling him a little pirate and just shrugged it off. Soon we begin to realize that his forehead was uneven and there was a ridge on the left side of his head. However, not having a medical background of any kind, it never occurred to us that there could be something seriously wrong with our beautiful, perfect, precious little Rocco. In fact, at the first few pediatrician checkups, we didn’t bother mentioning it to his doctor. Finally, as Rocco continued growing, we noticed his head was a little misshaped and his face was asymmetrical, with his nose and mouth pulling to one side. It was only visible when we looked at him in the mirror, and our families never did really notice the twist of his face. At Rocco’s 2 month wellness checkup, we finally mentioned it to his pediatrician. She didn’t think it was anything serious, but did refer us to the Cranio-Facial Center at UPMC Children’s Hospital in our hometown of Pittsburgh, Pa. I honestly thought maybe he was just a little misshaped and would need helmet therapy for a few months, but on October 16, 2012, at our cranio-facial consult, our greatest fears were realized and we were put to our first big test as parents. The nurse practitioner who met with us before the craniofacial surgeon diagnosed him almost immediately. Then the surgeon came in, and he too, could clearly see it was Craniosynostosis. We were immediately sent for a CT scan for visual confirmation, and then back to the surgeon, who viewed the CT and diagnosed him with Right Coronal Craniosynostosis. He then went over our options, one being a less invasive procedure paired with a year of helmet therapy, and the other being an invasive cranial vault remodel (CVR) typically done at 9 months since his case was only moderate and there was no threat of brain pressure to Rocco. Our decision was the CVR since the odds of multiple surgeries with the less invasive/helmet therapy option were significantly higher. The next few weeks were plagued with a neurosurgery consult, genetic testing, and ophthalmology consults. All consults went as expected, and testing concluded, very fortunately, that Rocco’s condition was isolated and not the result of genetics or any syndromes. This was simply how God made him. We survived the next 6 months of waiting and took Rocco in for his surgery on Friday, April 26, 2013. We parted with him at 7:30 am and it was the hardest thing I’ve ever done in my life. The wait was excruciating, but 6 hours later, at around 1:30 pm, we were finally reunited. Rocco’s head was wrapped up like a little Eskimo, and my baby looked so sweet and peaceful lying on his hospital bed. The surgery went great. Both the plastic surgeon and neurosurgeon were happy with their work, and we were able to start the healing process. The next 36 hours were difficult to watch as a parent, as Rocco’s little face swelled, but at all times, he never really cried or seemed to be in much pain. The doctors and nurses kept him calm and comfortable, and it seemed that just touching his mommy and daddy’s faces helped soothe him. By Sunday evening, April 28, he was able to open his eyes a little bit and was deemed stable enough to move out of ICU and into a regular room. By Monday, our little soldier shocked us, as his eyes were open, the dressings came off, and he started eating solid food again. That evening he was sitting on our laps and playing with his toys, eating cheese puffs, and obviously having no idea what he had just been through. We were discharged on Tuesday, April 30 after a CT scan confirming all looked well. By the time we got him home on Tuesday afternoon and gave him lunch, he was sitting in his highchair screaming with glee and excitement – as happy as we were to all be home, healthy and on the mend. By 2 weeks post-op, the swelling was gone, his hair was growing back, and the gnarly scar on his head was starting to scab and heal. It was amazing to watch him bounce back so quickly, and such a relief that we could close this chapter of our life. Now, at 6 months post-op, those who don’t know about the surgery have no idea Rocco ever went through it, and those who do know are completely impressed by how incredible he looks. As a mother who was “there”, my advice to any mother whose baby was just diagnosed would be: enjoy your time with your baby and don’t let this be a black cloud that gets in the way. It will soon just be a memory for you, and not even that for your baby. I made sure I enjoyed every second of Rocco’s first year of life, even with the surgery looming, and I’m glad I made that decision and followed through. It is a year that I’ll never get back as a parent, and now I have no regrets. The surgery really was just a few days of heartache out of a lifetime of joy I will have watching my little boy grow.
