Gabe's story
On June 17, 2005 my first child, Gabriel, was born and he was the best baby. He only cried if he needed to be fed or changed and he was always happy and smiling. From the time he was born, though, I knew something just wasn't right about his head. The first thing I noticed was how small his forehead seemed to be. Also there was a visible ridge down the middle of his forehead and no soft spot. The doctors at the hospital told me that it was from the birth and that it would resolve itself. At Gabe's two-week checkup I mentioned the ridge to the pediatrician and he just repeated what the hospital had told me. As time went on, however, I noticed that the ridge was not getting better. It was actually getting worse and his temples looked indented or pinched. At Gabe's two-month appointment with the pediatrician I brought up my concerns again. This time the doctor didn't even look up from his chart as he told me the same thing I heard at the last visit, "It will go away on it's own." Deep down I knew that something wasn't right, but I am no doctor so of course I trusted him over my new-mom instincts. After the appointment I was feeling a little better about the whole thing until the next day. My mother-in-law, who was more concerned about the lack of a soft spot than the ridge, sent me an email with a link to a website about craniosynostosis. As soon as I saw the pictures of the other children I knew what was "wrong" with Gabe.
Craniosynostosis is the premature closure of one or more of the sutures in a child's skull. An infant's skull is made up of moveable plates to allow for the rapid growth of the head and brain during early childhood. The lines where these plates meet are called sutures. If one or more of these sutures is not open and expandable, the brain is forced to grow in a different direction resulting in a skull deformity. Although the most noticeable complication with craniosynostosis is cosmetic, there are many possible complications including headaches, vision problems, developmental delays and intracranial pressure. I made an appointment with my family doctor the very next day. I printed out all the information I had researched online and went to the appointment prepared for a fight if I got the same response from him. That didn't happen, though. He agreed with me completely and sent us for a x-ray that very same day. Although the x-ray results looked like the suture was closed, they could not formally diagnose with a x-ray so we went for a CT san a few days later. In the mean time, I was trying to find a hospital and surgeons to see Gabe because I already knew what the CT was going to say, and I was right. Gabe was two months old when he was diagnosed with metopic craniosynostosis. The metopic suture runs from the top of the head (where the soft spot is located) down the forehead to the bridge of the nose. I was devastated! Everything that I had read online scared me and a lot of the information was contradictory. Apparently there has not been enough studies done on craniosynostosis to give any conclusive facts and the information that is out there is mostly the opinions of different surgeons. We took Gabe to the neurosurgeon in August and were told that the CT scan did not show any pressure in the skull. I was so relieved. He did say, however, that Gabe would need surgery. I had already assumed that it would be needed, but to hear it confirmed was heartbreaking. After we met with the neurosurgeon, we met with the plastic surgeon that would be on the surgical team. The surgery date was set for February 17, 2006 (Gabe's eight-month birthday).
For six months I did as much research about craniosynostosis as I possibly could. In my research I found a wonderful informative site and support group at www.cappskids.org The parents in that group are incredibly smart and compassionate! I can't say enough about how they have helped me through this entire situation and they have truly become my friends. Finally I had found people that had been where I was and could really understand all the feelings I was having (even the ones that I thought were completely irrational). As the surgery grew closer, the more I depended on these people.
The week before the surgery I was a mess! I was worried about everything from the surgeons having to shave his head for the procedure, to the way Gabe would look after, to actually losing him during the surgery. Thinking about it made me sick to my stomach. I just knew that I would fall apart at the hospital. Surprisingly, I was completely calm. I was as prepared as I possibly could be and I knew that the situation was out of my hands. The hardest part was when I handed him over to the nurse. The actual procedure was about four hours (much shorter than I thought it would be). The first time I saw him after surgery was amazing. I could see a difference in his forehead immediately, even with his head wrapped in bandages. He was beautiful! The next few days were the hardest of my life. Those of us who have made it through the recovery period affectionately refer to it as "hell week". There is no other way to describe it. Since the surgery was to reconstruct the forehead and brow bones, the swelling (which peaked on the third day) was predominately in the face. He swelled so badly that his eyelids actually flipped inside out. We were in the ICU for five days instead of only one because of the swelling and pain management. Gabe was given morphine on a time schedule in the beginning to try and control his discomfort. That just wasn't enough for him and they had to switch to a constant morphine drip. They even had to give him Tylenol on top of the morphine sometimes. I think a lot of the discomfort was the fact that he couldn't open his eyes and he was frustrated. On top of the pain, the morphine made him itchy. He had braces on his arms called "no-no's" to keep him from moving and trying to pull at the IV's. He would wiggle and roll around until he moved down, over his hands and as tried to scratch his nose he would hit himself in the head with them. He used the velcro to scratch and he rubbed the skin raw on his nose. It looked almost like road rash. On the fourth day in the ICU Gabe's swelling started to come down. I knew that we had made it past the hardest part and everything was going to get better really fast. He started playing and smiling even with his eyes swollen shut. By that night he was able to open his eyes a little for the first time. That was a wonderful moment! He looked at us and gave us the biggest smile. They were also able to take him off of the morphine and switch to only Tylenol. We were finally released from the hospital six days after the surgery! I have never been so happy to go home in my life. By the time we got home, Gabe was acting as if nothing ever happened. It took a few weeks for the swelling to go away completely.
When we went for the first post-op appointment with the surgeons we were told that Gabe would need to have a molding helmet to help hold the shape of the skull and protect his head. It is a good thing that we got the helmet because Gabe started walking a month after surgery. I was a nervous wreck, but he was fine.
Now Gabe is a happy, healthy one-year old and you would never know that anything ever happened to him. You can't even see the incision scar in the hairline. I never thought that Gabe could be any happier than he was before surgery, but he is. There were days before the surgery when he just wouldn't smile. I thought he was just in a bad mood. The change in him has been truly remarkable. After the surgery, it was like someone had turned on a light inside of him. He is happier than every before. I know that I made the right decision for him and I don't regret one thing. Everyday I am thankful that he had a condition that was TREATABLE. There are a lot of people out there that can't say the same!!!!
Gabe before surgery
Gabe's surgery pictures
Gabe after surgery
