We were blessed with our precious baby Keegan James, who was born full term on his due date of 3/3/2012. Our hearts melted when we saw him. He was the sweetest baby with big beautiful eyes. We saw a colleague of our pediatrician at the 2 week visit, as our pediatrician was out of town, and the doctor mentioned he was suspicious of scaphalocephaly (sagittal). Keegan had a prominent forehead which became narrow towards the back of his head and there was a palpable ridge along the top of his head from front to back. He showed us a diagram of different head shapes and Keegan’s was a perfect match for a prematurely fused sagittal suture line. We asked what would need to be done if this was indeed true, thinking probably a helmet, and were both shocked to hear of the need for surgery. We were told to follow up with our regular pediatrician at the one month mark. Keegan hadn’t passed his right ear hearing test in the hospital, so the next appointment that day was for a repeat audiology test, which he again failed, and I no longer could hold back the tears.
During the 2 week wait to see our regular pediatrician, I researched the new words we had learned online, “scaphalocephaly” and “craniosynostosis”. Each website I looked at reiterated “surgery” “surgery” “surgery” and the possibility that it could be linked with different syndromes and developmental issues. What an incredible fear to have, knowing your new little baby may have to undergo a major surgery sooner than later, let alone surgery of the skull. We saw our regular pediatrician when Keegan was one month old, and the second she walked into the room and looked at Keegan I knew what she was going to say. I was absolutely devastated and could not stop the tears from falling during the entire visit. We felt as though we were in a different world and this could not possibly be true.
We were then referred to a craniofacial surgeon at Gillette Children’s Hospital in Minnesota, where we live, to ultimately decide if Keegan did indeed have scaphalocephaly. We saw Dr. Martin Lacey on April 5th, who described in detail craniosynostosis, the surgery he typically performs for scaphalocephaly and the general recovery period. He ordered a CT scan which was done that same day, and after the scan we returned to the clinic and he confirmed the diagnosis. By the time we left his office we already had the surgery papers filled out and I felt as though my world was crumbling around me. The surgery date was set for June 27th, over 2 months after this appointment, as Dr. Lacey typically performs this type of surgery when the children are 4 months old.
Keegan was such a smiley and happy baby. I remember smiling back at him while thinking and praying that this surgery would not change who he was or who he is supposed to become. We have been blessed with many faithful family members and friends who were amazing prayer warriors for Keegan and our family. We would not have been able to go through this without them and we are forever grateful for their help. My girlfriend from high school got a hold of me and told me of her friend Summer, who had a son with craniosynostosis as well, and had started up Cranio Care Bears along with Shelby, who had a son with craniosynostosis as well. I was finally connected to cranio moms who had been through this before, and that made all the difference in the world to know we weren’t alone. It was incredible how many of our friends and coworkers knew of someone who had had craniosynostosis or even they themselves have had the surgery, up to thirty years ago.
Our next appointment was not until May 15th, when we met with the neurosurgeon to discuss his role in the surgery, which was to protect the brain from any major bleeding. A week before the surgery we saw Dr. Lacey one more time to answer any other questions we had and we saw our pediatrician for the preoperative physical exam.
The night before surgery was very difficult, knowing the time had finally come. I woke Keegan up at 2:00am to feed him one last time before surgery. We then woke up at 4:30am, gathered up our things and drove to the hospital by 6:15am. From there everything moved quickly. We were brought back to one of the preop rooms that had a crib with a beautiful quilt in it for Keegan to keep, made by hospital volunteers. The anesthesiologists and surgeons came in to greet us, and Keegan was such a good boy, he fell asleep in the crib so he was sleeping when they wheeled him into the OR. This was definitely the moment I was fearing, though a bigger part of me was telling me it was for the best and God’ peace surrounded us and gave us strength. They did all of the IVs and lines after they put him to sleep so he wouldn’t have to be awake for it. The actual surgery flew by and before we knew it, he was done and we were able to go and see him in the recovery room. We were transferred to the PICU later that day and by evening I was able to hold him, which was the best feeling in the world! He would cry whenever he was moved, but this improved over just a couple of days. He definitely slept best when I held him. He needed a blood transfusion during and just after surgery, and again 3 days after surgery as his blood level kept going down. He had minimal swelling and his eyes were open the whole time. He was such a trooper through it all! Now he is almost two months out from his surgery and he is still the same bright and happy baby he always was, but now he has a beautifully shaped head to match. What an amazing journey to go through. To see how strong our little ones are is incredible! God holds them in His arms each step of the way.