I went in for a scheduled C-section with my third child on August 4th, 2016. This was both my first C-section and my first son. I was absolutely elated, even after a hard delivery where I hemorrhaged and required blood transfusions (probably related to the placenta previa that drove us to have a c-section in the first place). My sweet little boy was finally here! I noticed in passing that his head was a little elongated but didn’t pay it too much mind. I did think that babies only had head trauma when passing through the birth canal, but chalked it up to not knowing enough about C-section deliveries or the possible consequences of having placenta previa. With placenta previa, the placenta is attached at the bottom of the uterus rather than the top. And my little Luke was in the birth position, head down, from about two months into my pregnancy until delivery. So, I just figured that the placenta may have crowded his head during my pregnancy and it would work itself out.
On day two at the hospital, the pediatrician came in to evaluate Luke. He immediately began running his fingers over Luke’s head. I was very nervous because he spent too much time “looking” at him. He returned Luke to the hospital bassinet and came over to us. He said, “I think we should schedule your son for an x-ray”. He may have Sagittal Craniosynostosis. He may have what??? This is a word I had never heard, but one that would become acutely familiar to me in the upcoming weeks and months. I’m sure I would have googled it when he left, but I was in such a state of shock that everything he said was just a big haze….and when he left, I could not remember the “condition” he stated my son may have. I lifted my son from his bassinet and ran my fingers over the little ridge on this head that the pediatrician had pointed out. Then I just kissed his head over and over and cried.
Day three at the hospital, we wheeled Luke in his bassinet down to x-ray. He was a perfect angel as they got him situated for the procedure. In five minutes, it was over and we were on our way back up to our room to await the findings. Mike had left to pick up a nice dinner for us when the doctor came in. This was not the initial pediatrician and to be honest, I’m not really sure who she was. Again, everything became fuzzy and unclear as she began telling me that the diagnosis was confirmed. She explained the condition and what the typical path forward was….of which I remember absolutely nothing. I tried not to burst into tears as she talked me, but when I called Mike moments later, I was crying so hard I thought I might hyperventilate.
After I calmed down, I googled the condition. Well, actually I was still unsure of what the condition was called. But I had gotten the sagittal and the Cranio part and thanks to googles intuitiveness, it directed me to the correct word. I spent the next few hours looking up everything I could on the condition.
Day four, time to be discharged! The pediatrician comes back to talk to us about Luke. He tells us that Luke will require surgery (which we already know thanks to the internet!). But that they did not perform that surgery at the hospital we are at. We were referred to Duke Children’s Hospital and they had already set into motion an appointment with a pediatric neurosurgeon. They gave me her name and number and said she would be contacting us within 3 days to set up an appointment.
Like clockwork, on day three, the pediatric neurosurgeon’s office calls to schedule an appointment. And a week later we are off to see the neurosurgeon, Dr. Muh. She was super!!! So patient with all our questions and explaining our options for surgery. She recommended the endoscopic surgery and we readily agreed to the least invasive option. She ordered a CT scan to confirm the diagnosis and scheduled an appointment with the plastic surgeon that would accompany her in the procedure. A week later, we are off to get the CT scan and meet the plastic surgeon. The CT scan was a struggle. Luke didn’t particularly like having his head strapped to those wedges and screamed bloody murder. And of course, they couldn’t get an image while he was screaming. I tried my best to comfort him and finally he calmed down for the 5 seconds needed to get a clear image. Shew! As I walked out, I asked my mom if she could hear Luke screaming. She said everyone there heard him. LOL
Next, we head to the plastic surgeon, Dr. Marcus’s office. He is great too!! He told us Luke was the youngest child to be referred to Duke for this condition, being diagnosed at 2 days old and confirmed with x-ray at 3 days old. So, a major kudos to Wake Med Women’s Hospital and their amazing staff and Pediatrician for being on the ball with this! While visiting with Dr. Marcus, he invites a family (from the room beside us) over to talk with us. Their son was six months into his helmet therapy and there for a visit. They were able to show us the helmet as well as share pictures of their son immediately after surgery and discuss their experience along the way. That was so incredibly helpful and helped ease our minds about the entire situation. Dr. Marcus said they would shoot to do the surgery when Luke was around three months. The Big Day is November 14th, 2016. Luke will be 14 weeks and 4 days old. I’ll update my story and additional pictures once the surgery is completed.
I would like to say I am extremely grateful for your site and your dedication to bringing awareness and love to the families affected. This diagnosis can be overwhelming, but the information and stories shared here bring have brought hope and strength to our family. I am also very grateful for an amazing team of doctors who immediately diagnosed our son and held our hands every step of the way.
In God, all things are possible