Ryder was born in January 2016 and we immediately noticed his forehead had a point so we gave him the nickname Ryder the Rhino. Our doctors assured us that it was the way he carried during my pregnancy (he was breached until 36 weeks and was face-up during labor). Our normal pediatrician came in on that Monday to check him out to be discharged and he also noticed it. He said that we would revisit that at our 1 month well-check appointment.
Our 1 month well-check came and he noticed that it wasn’t correcting itself and looking a little worse than when he was born. He wanted Ryder to have a CT scan that afternoon to make sure nothing was out of the ordinary. The next day, I was with my husband and my mother-in-law when his pediatrician called me. When I heard his voice, I knew immediately that something was wrong. All I remember hearing was this long word that went in one ear and right out the other because I was trying to keep track of everything and then he said neurosurgeon. My heart dropped! I couldn’t believe that my baby boy was going to have to meet a neurosurgeon so early on in life. We went in to talk to him in person that same day so we could get a good grasp on everything. Once he explained what metopic craniosynostosis was, we knew that we needed to do as much research as we could to make sure that Ryder had the best shot for a successful outcome.
We were initially referred to a doctor in Sioux Falls, SD at Sanford Children’s Hospital. I have an uncle that is a retired doctor and I asked if he had heard of this doctor and he said that he had not. We did find out that he had only done 2 craniofacial surgeries in his entire career. We started to look elsewhere and using every resource we had. We found Dr. Wood and Dr. Graupman at Gillette Children’s Hospital in Minneapolis, MN. I made the call to our pediatrician to send the scans to them and also send the referral to them. I called their office to setup the consultation and we didn’t know what we were walking into.
We met with Dr. Wood and Dr. Graupman in February 2016 and were impressed right away. We were really hoping that he wouldn’t have to have surgery but we didn’t know anything about this condition so we were feeling optimistic. When we heard that the only way to correct it was to have surgery we were devastated. But we felt really good about the doctors because they do this surgery almost on a daily basis. We scheduled his surgery for July 22, 2016 and had to go through 3 rounds of steroid injections to build up his blood counts to prevent a need for a transfusion.
While we were waiting for the surgery to come, we noticed that Ryder was definitely behind developmentally. He could not sit up on his own yet and he couldn’t hold his own bottle or roll over onto his belly yet and he was already six months old in July. Surgery day had finally arrived only to be disappointed and had to start the waiting game all over. Ryder had been teething so he was running a fever, which he has always ran a higher fever than most kids do while teething. We tried to explain to the medical team that it was just his teeth causing the fever and he was healthy but they didn’t want to risk it so we decided to head home.
We rescheduled his appointment for as soon as we could because the clock was ticking with his steroid injections. We rescheduled for August 4th and we wouldn’t be getting our original neurosurgeon but we didn’t have much of a choice. We got updates every half hour with how he was doing and when we could go back and see him. The surgery went according to plan and was a huge success! They did say however that it was a lot more extensive than they were expecting when they got in there. They did tell us that the swelling would be pretty bad because of the severity of his condition.
He was just coming out of anesthesia when we saw him and he was already kind of fussy but he heard our voices and he wanted us to hold him but we knew we couldn’t for a little while.
We were out of the hospital within four days of being there. He was taking his pain meds orally and eating normally. The only thing was he still couldn’t open his eyes because of the swelling. We drove 6 hours to get home to our other 2 kids and just start the healing process. We could already tell that it had helped him tremendously. He was trying to sit up on his own, even though his head was still pretty swollen and heavy. He was starting to roll over and play a lot more.
We went to our one year follow up last August and we were informed that he was showing signs of recession, but they gave us 3 possible scenarios.
- Best case scenario is it will correct itself.
- 2nd scenario is he will need bone fillers.
- Worst case scenario is he will need to have the surgery redone.
His doctor is confident that he will not need to have the surgery again but as a parent you can’t help but to fear the worst. We go back again this summer and I can’t wait to hear what they have to say and see how much he has grown and developed!