Aiden James came into the world on May 26, 2011 at 3:24pm weighing 6lbs 11oz, 19 ½ inches long. We were overjoyed! It had already been a long hard road up until this point. I had suffered two early 1st trimester miscarriages the previous year and had to undergo surgery in June 2010 to be able to carry to term. Aiden was our little miracle! In the hospital my husband mentioned to me that Aiden’s head looked a little misshapen and he appeared to be “pinched” at the temples. The many doctors and nurses that saw Aiden over the 4 days we were in the hospital showed no concern over the shape of his head so we chalked it up to being due to delivery. We took our baby boy home with no idea about what was to come. No one ever mentioned Aiden’s head shape appearing abnormal to us…not our pediatrician, not friends or family, and as his parents I think we just saw him as perfect. But at a routine well visit in July our pediatrician expressed concern over the fact that Aiden’s “fontanel” was very small. He said he wanted us to get an x-ray of Aiden’s skull to look for craniosynostosis. Cranio what?? I couldn’t even pronounce it and had never heard of it. I didn’t even know what questions to ask. I went home and began researching right away. When I read about the metopic suture and saw pics of some of the babies heads I began looking at Aiden’s head from different angles…and sure enough I saw it…the triangular, “boat shaped” head as it was described. My heart sank. But I held onto the hope that my instincts were wrong and the x-ray would show my baby’s skull was just fine. We went for the x-ray a few days later and waiting for the results was brutal…little did I know this was just the beginning of the waiting and worrying. The X-rays came back inconclusive because they could not see all of the sutures so we were told Aiden would need a CT. The day of the CT we sat in the waiting room of the radiology department at CHOP and as I held my sweet baby boy worrying about what was to come I looked around and saw children that were very sick…obviously sick and I knew then that it could be so much worse. But this didn’t diminish the fear that I was feeling for my own little boy. It only took one try to get the CT scan and Aiden slept right through it. The following week we received the dreaded phone call from our pediatrician that yes Aiden had Craniosynostosis of the metopic suture. I was scared, worried, angry…I felt things like “why is this happening to our baby…he doesn’t deserve this” and “haven’t we been through enough already?”…I worried about everything from surgery to developmental delays to how this would affect Aiden throughout his life. I spent plenty of nights crying myself to sleep over it but I knew that I had to be strong for Aiden. After meeting with a Neurosurgeon at CHOP who wanted to perform a CVR on Aiden when he was 7-11 months, we decided to seek a second opinion. We wanted to explore all of our options and I had read a lot about the endoscopic procedure and wanted to find out more about it and if it was an option for us. I knew from all of my research that the endoscopic surgery had a very specific time frame and Aiden was quickly approaching his 3 month birthday. During my many hours of researching I stumbled across a video of a Neurosurgeon named Dr. Ahn at Johns Hopkins. Although it was quite a distance for us from New Jersey to Baltimore, Maryland I called and was able to get an appointment and something in my gut told me we had to go! So the following week we packed up the car and headed out for our 2 ½ hour road trip. Our meeting with Dr. Ahn went well…he was extremely personable and made us feel so comfortable. He answered all of our questions and then some! He explained that if we did the endoscopic surgery Aiden would have to wear a molding helmet for about 6 months to a year and that would require a lot of follow up visits. He even had us drive to the Cranial Center to find out more about the helmet therapy and make sure this was something we could commit to. After much thought and struggling to decide what would be best for us we decided Aiden would have the Endoscopic Strip Craniectomy with Dr. Ahn.
August 29, 2011 would be the day. I remember surgery day like it was yesterday. I remember feeling so sick with worry the night before, breaking down several times that day, and I will never forget walking my 3 month old baby boy back into the OR and handing him to the nurse. They let me stand there and hold his hand while they put the tiny mask up to his face to put him to sleep…and then I had to turn around and walk out leaving my baby boy behind…I will never forget that feeling. I knew he was in great hands with Dr. Ahn but it was still the hardest thing I have ever had to do. I remember the moment the receptionist in the waiting room said Aiden was out of surgery…and the relief I felt when Dr. Ahn came out to tell us that Aiden had done wonderfully and we would be able to see him soon!! Seeing my baby boy hooked up to all those monitors and with that big bandage around his head was a feeling of mixed emotions…it was hard to swallow but seeing that he was ok brought me so much joy! And when he opened his eyes and looked up at me and smiled…my heart melted. After all he had been through he was still smiling…He is my hero!! Aiden did extremely well recovering from surgery. His hemoglobin was a little low when they discharged us the following day so we had to follow up with our pediatrician but other than that he did great. He had only mild swelling and took about a week or two to get back to his normal eating and sleeping schedule but overall his recovery went as well as we could have hoped!
Aiden continues to do great and amazes us every day with his strength! We had him fitted for his first helmet the week following surgery and he did great with it. I think we were more bothered by it than he was. He is now on his second helmet and has adjusted so well! We have seen Dr. Ahn twice since surgery and he says Aiden is doing great. His scar healed nicely and it is so small you can barely notice! And his head shape has already changed dramatically. I still worry about what the future holds but every day Aiden shows me that he is a strong little guy and he can get through anything! We continue to look forward to the day this cranio journey is behind us! I hope our story can help a family that is facing this journey…it is not an easy road but you will get through it! Good luck and prayers to all!!