Where do I start…Mason was born Jan 20th, 2012 via emergency C-Section, after a 21 hour labour, 9 centimeters dilated, but his head was sideways and he wouldn’t turn. I then had a fever and the doctors were worried about infection and the fever affecting Mason, so C-Section it was. He was born at 9lbs 1oz, a healthy big boy :-D Mason is our 1st child so when we noticed at birth that his head looked more oval than round, we weren’t too concerned as we thought it was because of his position during labour, and other family members said the same and told us that it should take its round shape in time. At Mason’s 2nd month doctor appointment, the doctor did a routine measurement of his head and told us that its size was just above the normal. She wanted to refer Mason to a pediatrician. So we waited and waited for this appointment. In the meantime, in conversation with my friend she mentioned she was taking her boys to their annual check-up. Funny thing was their pediatrician is my pediatrician from when I was a child, so I went with her to the appointment hoping I could sneak Mason in. I did, and my former pediatrician actually recognized me (lol). I told him my concern about his head, and he took a look at Mason, started to feel his head and immediately said to me that he wanted Mason to have an Xray and Ultrasound done, and that he thought Mason had Craniosynostosis! I remember my body temperature rising (honestly, I could feel the sweat dripping down my back). I couldn’t believe what I was hearing. Craniosynostosis? What is that? I was stunned!! I cried the whole day, and many days after!! Waiting for results, I didn’t want to google or research anything that I didn’t know for sure was real for us! Results came back and we were told that both Xray & Ultrasound were normal and didn’t show signs of Cranio…Phew we were relieved. We followed up with the pediatrician at Mason’s 4 month old birthday, and Mason’s head size was still above the normal growth according to the chart. The pediatrician asked if Mason seemed to be developing and hitting his age appropriate milestones, ie. Laughing, smiling, alertness, hearing, etc…we confirmed that yes he was, he seemed to be a perfectly normal baby. He asked to follow up again in 2 months. To us parents, Mason’s head still looked more oval then round, with the back of his head and forehead protruding a little more. So at Mason’s 6 month appointment we saw the pediatrician again. He told us “I hate to do this to you again, but can you please take Mason to get another xray just to confirm if there is no sign of the sutures being fused” So we did, and sadly so, these xrays did show that Mason had Sagittal Craniosynostosis!
The pediatrician then referred us to a Neurologist at Sick Kids in Toronto. The neurologist confirmed the diagnosis and we then were referred to an Opthamologist, and he confirmed that Mason’s eyes looked normal and there was no pressure on the optic nerve…Phew!! Now, we had to see the Plastic Surgeon at Sick Kids. From there we did a CT scan, luckily we were able to a feed & sleep, and Mason didn’t require any sedation for it! It took 2 tries, but the CT Nurses were so patient with us!! We had regular photos taken and 3D photos taken of Mason’s head. Dr. Forrest and his team at Sick Kids were great and explained so much to us and answered all our questions. After all this time, the waiting game was horrible, but finally we had a surgery date (Nov. 20, 2012) Mason’s 10 month old birthday! The days leading up to surgery, I remember feeling so worried about Mason’s health and hoping he didn’t get sick as I did not want to postpone this any longer. He did have a little cough and I was worried surgery would be cancelled, so I saw Mason’s family doctor immediately and she confirmed that he should be ok to have surgery. Come day of surgery, the surgeon wasn’t concerned about his cough and agreed to proceed with the surgery. At 8am, we kissed our son good-bye, and Mason gave me a bite on my cheek, the nurse called it a love bite, and the tears from our eyes just poured down. 8 hours later, surgery was finally done and the surgeon confirmed that overall he was pleased with how everything went. We could breath now!! Mason however did lose 3 units of blood and because of his thin skin you can see some of the metal plates & screws that they used. The surgeon says that the plates & screws will dissolve in time, and for us to be patient. A moment that I can’t describe was when the surgeon came to talk to us after surgery, and during his briefing, I see a hospital bed about to be wheeled by us, with 6 people in blue scrubs, I knew it was Mason, and I literally pushed the surgeon out of my way and reached out to touch my son, it was such a quick moment, and I couldn’t stop crying as I saw them continue to wheel Mason away as I knew he had to get to ICU asap! Seeing our baby in ICU was heartbreaking, but the morning after surgery Mason was moved out of ICU and into his own room. Day 1 post-op I was able to nurse Mason! His right eye was swollen, but was enjoying to watch Baby Einstein’s Neptune (we brought 2 Baby Einstein DVD’s which Mason loves)!! Day 2 post-op, he started to sit up but had developed some fluid in the back of his head, had a fever in the morning, right eye still swollen a bit. Fever did go down after Tylenol! Day 3 post-op his White Blood cell count was high, and they were worried about infection. Also, finally Mason had some bowel movements which was a relief for us and for sure for him!! He was also playing, talking and laughing more!
Day 4 post-op, Mason’s white cell count had dropped and his appetite was getting better! Finally after 6 days, we were discharged from the hospital…YEAH!!! Since being home, Mason continues to do well. We have follow-ups with the surgeon and he confirms Mason’s healing is great! Mason’s hair was not shaved and he didn’t have any bandage after surgery. The scar is healing nicely and has been pretty easy to take care of! Mason is a trooper!! Such a huge operation for such a small little guy, but proof of how resilient babies are!! I know this was long, but this is Mason’s Sagittal Craniosynostosis journey! Lots of tears, but lots of support, love and prayers from family, friends, God and from Cranio Care Bears!! Also, because Mason’s surgery was just before Christmas, we decided that to support the awareness for Craniosynostosis, we purchased all our Christmas gifts for our family & friends from the products offered on the Cranio Care Bears & Cranio Kids websites (from Bracelets/T-shirts/car magnets and more)!! Our family friends were thrilled to receive them and we were thrilled to support these amazing organizations!!! God Bless and thank you for letting us share our story!!
Julie (Mama), Frank (Papa) and Mason Sousa (Trooper!!)