Mark – Sagittal

On May 9, 2012, we welcomed the most amazing little boy into our lives. Mark was born happy and healthy. With the exception of Mark being breech and having a two-vessel umbilical cord, the pregnancy was a normal one.

At Mark’s 2 month visit, his pediatrician mentioned that his head was beginning to take on characteristics that were indicative of Scaphocephaly and that we should watch his head shape. If it were to continue growing from front to back instead of all around, he may need to see him again before his 4 month appointment and determine whether he would need helmet therapy or surgery. I continued to watch his head but his head shape did not seem to worsen in my eyes. Not having any other children of my own to compare him to, I was not noticing any significant changes in my son.

About two weeks later, a friend of the family mentioned that the shape of his head was cause for concern. We brought him back to see the pediatrician and after feeling around for Mark’s fontanels, he confirmed what we were afraid to hear – our baby may need surgery. His Sagittal suture seemed to be fused prematurely. We were sent to Children’s Hospital of Philadelphia that week for an X-Ray of Mark’s skull to confirm the diagnosis of Craniosynostosis. The very same night, our pediatrician called with the results. Mark had Sagittal Craniosynostosis and needed surgery to correct it.

Even though we knew there was a very strong possibility of surgery, we were devastated. Our search for knowledge about Craniosynostosis continued. We researched online and found out that it was a common condition, occurring in 1 out of every 2000 births. There were many types of surgeries that were possible for correcting his skull and we had so many questions. Thankfully, we knew that we were in great hands with the neurosurgeon at CHOP. We met with the surgeon, set the date, and leaned on our families and friends for what seemed like an eternity waiting for the day of surgery, 8/21/12. Mark would be 3 months old.

We prayed a lot during this time – mostly for strength for little Mark to make it through the surgery with no complications and for his recovery to be quick. The morning of his surgery, while waiting for the surgery team to take him to the OR, he was laughing and smiling at us. When they finally came to take him, we gave him huge hugs and kisses and broke down after he left. This was it. The day had finally arrived.

Not even an hour after surgery had begun, the surgeon came out and told us everything went well – and the surgery was successful. They were moving our baby to the PICU and we should be able to see him soon. What the surgeon did not know was that our son had gone into SVT while coming out of anesthesia. SVT is supraventricular tachycardia, which is an irregular heartbeat. Had we not gone through the surgery, we may not have known about it! Needless to say, he was watched closely after surgery and has not gone into SVT since. His recovery from the surgery was amazing. Every day, he continued to make tremendous improvements and once I was able to hold him, I began to heal as well. Our little boy got us through this journey with his unwavering strength and smile. He is now almost two months post-op and besides the fading scar on his head, you would never know he went through the surgery at all.

The gift we get from this journey as parents is seeing the strength of our little ones and realizing that their strength is what gets us through.