6/24/14 Today marks our son Brendan’s third “Cranioversary.” We finally thought we’d share our story in hopes to help other parents, like those who have helped us. Brendan was born on January 17th, 2011. We were so overjoyed to finally be holding a baby in our arms, after I had a devastating miscarriage in my second trimester almost 1 year earlier. I will always remember my neck actually aching from looking down at him so much. I was so in love. Not long after we brought him home we had our first “well-child” check up with the local pediatrician. I remember the doctor’s abrasive approach telling me that Brendan’s head didn’t look right and he might need to have plastic surgery. She recommended that we take him to Children’s hospital to see a neurosurgeon. I was devastated. The words, “plastic surgery and “neurosurgeon” just kept playing through my head. I remember her using the word craniosynostosis. I was so offended that someone would call my sons head deformed. She also mentioned that he might have some developmental delays. More than that I was crushed. After all, I am an elementary school teacher and I have my bachelors’ degree in early childhood education. What does this doctor know? She doesn’t have kids of her own…..
After his appointment I called my husband who was also crushed. I went home that afternoon and cried my eyes out and finally had enough sense to start researching. Finally, using good ol’ google, I stumbled across a new website called: craniocarebears.com . This site was created by two Mom’s who looked like me, and who defined craniosynostosis in a loving and educational way. I contacted Summer Ehmann and we e-mailed back and forth. She reassured me that everything would be just fine. While I felt better, I still couldn’t believe that my family was going through something so horrible and devastating.
Meanwhile between January and June we had several appointments at Children’s Hospital in Aurora with several neurosurgeons including Dr. Winston and Dr. Hankinson. I remember both Brett and I thinking how young Dr. Hankinson looked. He couldn’t have been more than 30, and feeling a little unsure if we could trust his experience. I know they walked into the room, just looked at Brendan and diagnosed him immediately. However, they want ahead and looked at his CT-SCAN and officially diagnosed him with metopic craniosynostosis. Dr. Winston actually explained that metopic cranio is a ridgeline on the forehead, and then showed us his own metopic ridge. Yes, a neurosurgeon, an extremely intelligent man has metopic cranio himself. I felt somewhat hopeful at this point. Dr. Hankinson also gently pointed out that Brendan’s eyes were closer together than normal that he has “pinching” on the forehead. I never really noticed it before, but could easily see it after he showed me. It looked like Brendan’s little forehead had been pinched together.
Then, they dropped the bombshell on us…… They basically said it was our decision as parents if we wanted to operate. They also explained the possibility if pressure on the brain leading to blindness, language delays, and deformities, etc. We walked to the car in the hospital parking lot and again were just devastated. We cried and yelled and called our family. Brett and I disagreed about the topic of surgery. Brett didn’t think it was necessary to put a baby through surgery for cosmetic purposes. I think he was blind to how bad his little head actually looked. No parent wants to admit there is anything wrong with their child. I on the other hand was scared to death of losing another baby, I knew Brendan would face emotional damage if we didn’t have it fixed.
I ended up talking to friends back in the San Luis Valley and discovered that one of my best friends is a cranio kid as well as 2 other guys we went to high school with. I did some researching and found that the Valley’s high altitude might play a factor in the high rate of cranio, as well as the fact that I took extra folic acid while I was pregnant. At any rate, I was relieved to learn that kids that we went to high school with, had survived having this operation some 20 plus years earlier.
We had to go back to Children’s Hospital on Memorial weekend for a follow up appointment. They did another CT-SCAN and now found that Brendan not only had metopic but sagittal craniosynostis as well. The combination made neurosurgery medically necessary. I asked that the mortality rate was for this surgery and Dr. Hankinson said, “Less than 3%”, then he looked me in the eye and said, “We’ve never lost a baby here at Children’s. While this was difficult to hear, both Brett and I were relieved that the decision was now out of our hands. We booked surgery for the 24th of June and that was that. The next 3-4 weeks of waiting were excruciating. This was by far the most difficult time in our lives’. I remember Brett and I would take turns having break downs. One of us somehow was strong when the other one needed it. I took pictures of Brendan obsessively and we cherished every moment. I never wanted to say it out loud, but I wasn’t 100% certain he would pull through and be okay. I wanted to have as much of a memory of him I could.
In the meantime, we received a care package from craniocarebears.com, home cooked meals, and baskets full of goodies for Brendan from family and friends. Before we knew it June 23rd rolled around and we were headed back to Children’s Hospital for pre-op. We were so impressed how this hospital catered to little kids. They did Brendan’s blood work and he didn’t even cry. Amazing!
Well, Brendan’s white blood cell count came back a little high and I remember the nurse saying we might have to postpone surgery. Dr. Hankinson walked in, looked at the numbers and he said, “Nope, it’s a go!” We were so relieved not to have to drag out the agony of waiting. That evening, all of our parent’s and siblings went out to dinner with us. I couldn’t eat and physically got sick. I was so nervous. Both Brett and I were trying to delay time and just enjoy every single second with Brendan.
The day of surgery rolled around and we somehow drug ourselves to the hospital to find our family all there waiting for us. A truly indescribable feeling. They quickly called us back and “prepped” Brendan for surgery. They washed his hair and he was just having the best time, playing and laughing having no idea what was coming next. Dr. Hankinson walked in and I remember him looking at me while I was teary eyed. He put his hand on my back and I lost it. The hardest thing is handing over your precious child not knowing with 100% certainty that you’re going to see him again.
They told us to expect a 4-5 hour operation. The “team” consisted of two neurosurgeons, two anesthesiologists, and other various nurses. They made a zig-zag incision from ear to ear and had to remove a good portion of Brendan’s skull. I remember Dr. Hankison talking about how they had to be careful not to “nick” the protective layer of the brain. These are all pretty gruesome thoughts to have of your own child. 5 hours rolled around, 6 hours rolled around and we were a nervous wreck. Finally, Dr. Hankinson came out and I couldn’t read the look on his face. He came into the waiting room and said, “Well he’s done! It was a little more complicated than we thought, and we had a couple hiccups, Brendan needed two blood transfusions, but he’s in recovery.” I can’t explain the relief I felt, a huge weight was lifted. We couldn’t get to recovery fast enough. Once I was with him again, I didn’t leave his side. I do remember him lying in that little hospital bed, with tubes going everywhere. He seemed to be confused and in some pain. I also remember the smell of blood, but none of that mattered. He made it through!
We were in the hospital a total of 3 ½ days. That’s pretty impressive when you consider what they did. I was so impressed how the doctors and nurses managed Brendan’s pain and gave him wonderful care. Brendan’s little eyes did swell shut for one day and his entire body became pretty puffy and swollen. We really had the best of both worlds with Dr. Hankinson and Dr. Winston. Dr. Hankinson as I mentioned was a younger doctor with new innovative skills and technology. Dr. Winston on the other hand, was more “old school” and insisted on using a drain in Brendan’s head. I truly think the drain was critical in keeping Brendan’s swelling to a minimum. Both Dr. Hankinson and Dr. Winston will have my heart forever. They are my heroes. How do you thank someone for fixing your son’s head? You can’t.
While we were at Children’s hospital, we realized how truly lucky we are. I thought Brendan’s diagnosis was devastating, end of the world type stuff. I quickly learned to be grateful for what I have. I thought, “this is fixable, what am I complaining about.” I also credit that “abrasive” pediatrician for catching Brendan’s cranio. I just hope she learns some bed-side manners.
Brendan is now, a very active, normal, ornery, loveable 3 year old little boy. He enjoys fishing, playing with dinosaurs and trains, and picking on his little sister. He speaks very well and doesn’t have any developmental delays. God is good! We celebrate his “cranioversary” every year with ice cream for dinner.
A few things that helped us get through:
-Talking with other cranio parents
-Looking at pictures of other kids and post-surgery pics to help with shock
-Cranio Care Bears
-Front-Snap onesies. (Not over the head onesies)
-Babies comfort items: blankets from home, pacifiers, music.
-Wagon Rides at the Hospital
-Faith (You’ll make it through)