The first time we heard that big scary word, craniosynostosis, it was in Spanish. We were living in South America when our third child Simeon was born via emergency c-section. While we were still in the hospital after his birth, my husband noticed an odd shape to his head, but I was too groggy and tired to notice and told him it probably just looked different because of the c-section. He brought it to the attention of the hospital pediatrician who explained that it could be a fusion of the skull which would later require surgery, and could possibly indicate a neurological problem. He ordered a CT scan, and before we went home the scans came back clear that there was no fusing on the top of his skull and we breathed a sigh of relief, for a while.
Once we had been home for a few weeks, we noticed a ridge forming on Simeon’s forehead, and used to joke that he looked like a lizard, or a turtle. We thought it was just his cute little characteristic, and had no idea it actually meant something. Around 6 weeks old, Simeon started to display some signs that he might have a neurological concern, so we brought it up to our pediatrician who said he didn’t think there was a problem, but recommended we see a neurologist anyways.
The neurologist, still in South America, was not concerned with Simeon neurologically, but when he looked at the scans from his birth, he pointed out that Simeon had a condition on the front of his skull known as “metopic craniosynostosis,” where the skull had fused prematurely and was creating that ridge and a triangular shaped head. He was very casual about the matter, and told us that it is just an aesthetic problem that would result in teasing later in life and that we should probably consider having him fix it when Simeon was 5 months old. I left the appointment sure that I would NOT let my baby undergo a serious surgery just so he wouldn’t get teased later on.
The more I talked to family and friends about it, the more people encouraged us to consider the surgery, even if it was just for aesthetic reasons. We started praying about if we should do this surgery or not. I remembered a childhood friend posting something on facebook about her son needing surgery to fix craniosynostosis. I emailed her and asked why she decided to go through with the surgery, and after talking with her (her son also had metopic), I was much more encouraged to look into this further. One of the things I took away from our conversation was that not all countries in the world see this condition as necessary for brain growth and development, but the U.S. is among those who will tell you that this is a neurologically necessary surgery, not just an aesthetic one.
A family wedding was bringing us back to the U.S., so I decided to make an appointment for Simeon to be seen by a neurologist in Seattle. Seattle Children’s Hospital was my top choice, but they had no availability for while we would be home, so we scheduled an appointment with another neurologist in the area who could fit us in. He looked at the scans, looked at Simeon and confirmed the diagnosis and again encouraged us that it was a good surgery to do based on aesthetic purposes and he too could do the surgery when Simeon was 5 months old. We decided to move forward with the plans for surgery, but later that day his secretary called and told us that he couldn’t do the surgery since he couldn’t find a plastic surgeon to work with. We were devastated, but this secretary worked very hard and pulled some amazing strings to get us a last minute appointment with Seattle Children’s Hospital (SCH) and a few days before we were set to fly back to South America, we got in to see them. We still get goose bumps when we think about how God provided that perfect and seemingly impossible appointment for us there.
I could go on and on and on about how wonderful SCH was when we were there, but I will say that after meeting with the head of the cranio-facial department, the plastic surgeon, and the rest of Simeon’s team, we were not only completely convinced he needed to have this surgery done, we were at total peace about it too. We were told that this is not just done for aesthetics, although that it a main reason, but also that it is really bad for the brain to be in a triangular position and that forcing the brain to conform to a different shape could cause all kinds of developmental delays, problems with sight, speech, hearing and chronic headaches or behavioral problems. We decided to move forward with the surgery, hoping it could be done when Simeon was 5 months old, but they told us that we needed to wait until he was at least 11 months old, and performing it sooner could result in further complications. They strongly encouraged us not to have this surgery done in South America as a blood transfusion was part of the surgery, and that we should only trust cranio facial specialists with this type of procedure. That news made us so thankful that we didn’t listen to the first doctor, and that the second one backed out on his own.
We went back to South America and waited and waited for that dreaded surgery date. I got a knot in my stomach every time I thought about it, and sometimes felt like Simeon’s baby-ness was robbed from me because the surgery was always in the back of my mind. Every sweet moment with him, every smile and giggle sent me back to the reality that in a few short months we’d have to go through something very scary with him.
We flew back to Seattle for the surgery, and the first time we got him all prepped and ready to go, the surgery was canceled the morning of due to his cold. I was devastated, and from then on when we talked about his new surgery date, it was with a “we’ll see,” attitude. It took us weeks to get Simeon well again for his next surgery date, so the night before his second scheduled date, I half heartedly packed our hospital bags and kept wondering if something would happen where we would be back in our own beds the next night, just like the last time. But by then, we were determined that this surgery had to happen – I had never fought so hard to have something happen that I dreaded so much.
The morning of the surgery felt so normal. We got up, got ready, dropped off our other two kids with family and left for the hospital. We got Simeon prepped and ready to go, and after a bit of a delay, we were handing him over to the doctors and walking away. That’s when my husband and I started to cry. An hour later we got the call that they had started the surgery, and about 3 1/2 hours in we got paged down to the ICU so the doctor could talk to us. I was shaking – wasn’t the surgery supposed to last 6 hours!? Immediately they told us that he had done really well and that the surgery was over and we could see him soon. I couldn’t believe this part was over, and we were on the other side.
I had heard other parent’s stories of how awful their kids looked right after surgery, so this was the part I was dreading the most. I nervously walked into the ICU room and when I saw my beautiful boy sleeping there, I couldn’t believe how good he looked! His face was angelic, and there was hardly any swelling. He was perfect. The days leading up to the surgery, I was so sad that the Simeon I knew and loved would look different, and not the same person I gave birth to, but seeing him post op, I didn’t feel any of that sadness. He still looked like our Simeon, just a little different, and much more like his brother and sister!
Over the next few days his swelling continued. I would say that day two post op was the hardest for me. That’s when his eyes swelled shut and he was the crankiest, but by that night, he turned a corner when one of the eyes opened back up, just a sliver, and his old personality started to return. By day three post op, they sent us home with no restrictions and very few pain meds! We couldn’t believe it! We still had three more outfits packed in our suitcases for our expected 5 night stay!
One of the highlights of our hospital stay was when Shelby and Summer from Cranio Care Bears both came to visit us. Even in the midst of Shelby’s own son’s surgery and recovery, they took the time to meet us, hand deliver a wonderful care package and encouraged me that this would all go well and be over soon. Even some of the practical hospital and post op tips that Shelby and Summer gave were so helpful and we used them multiple times during recovery. It was an honor to have them visit us, and I felt such encouragement from my fellow cranio mamas!
Our journey of craniosynostosis is long, but I wanted to share it because I wanted to encourage parents to get second, sometimes third opinion if you feel like something isn’t right with your child’s skull, but everyone else is telling you it’s fine. It sounds like a long scary operation with an ugly, scary recovery, but let me tell you, as someone on the other side, the surgery and recovery were just a small moment in my son’s long life and it was worth every ounce of worry and every tear during recovery to fix his head so he will have the best life he possibly can. If you are on the fence about if you should do the surgery or not, know that I was too, and now that we are on the other side I can confidently say I would make the same decision again to do this surgery. It feels like an elective surgery, especially because it is a “plastic” surgery, but hearing the surgeon tell us that he watched our son’s brain fill in to his new head shape, that was all we needed to hear to know that he was no longer at risk of inter-cranial pressure and that we did the right thing.
We are just three weeks post op, and Simeon looks perfect! He has hardly any swelling anymore, his stitches are almost invisible, and I feel like the worst part of this whole ordeal was the worry and stress leading up to the surgery. We are so grateful to God who protected our little baby and for all of our dear friends around the world who prayed for us that day, and during recovery.