Connor – Sagittal

On June 10th 2011 at 3:53 p.m. my husband and I welcomed Connor Hall into this world.  After being diagnosed with gestational diabetes and preeclampsia we were so relieved to hear he was a big healthy boy.  He weighed 8 pounds 5 ounces and 20 inches long at 37 weeks.  My life was complete, I had a beautiful healthy 4 year old daughter and now a precious little boy.  Everything was perfect.

On July 12th, I took Connor to his 1 month check up and that was when “craniosynostosis” became a word in my everyday vocabulary.  Being a registered nurse for 8 years I had never heard of this condition.  The pediatrician was concerned with the shape of his head and that he had a very small soft spot.  He had another pediatrician to come in and examine Connor’s head.  Both doctors agreed to refer us to the Center for Craniofacial Care at VCU Medical Center.  I remember the doctor explaining we would meet a plastic surgeon and a neurosurgeon to see if Connor’s skull would need to be reconstructed.  I left the doctor’s office in shock and in tears.  My husband and I spent the next several weeks researching Craniosynostosis, finding support groups and saying many prayers.

On August 2nd we met two amazing doctors, Dr. Rhodes and Dr. Tye, they both explained their roles in Connor’s care and answered many questions.  Dr. Rhodes took measurements and pictures of his head.  She did not feel like he needed a CT scan or x-rays.  I remember her saying he was a “textbook” case of Sagittal Craniosynostosis and surgery was the only option.  She explained recent research studies about how the risk of anesthesia decreases after 6 months of age and how Procit injections decrease the chance of having a blood transfusion.  After meeting the doctors, my husband and I were reassured that we had chosen the right doctors to care for Connor.

As months passed I could realize that Connor’s head was growing oblonged and the ridge on the top of his head was more predominant.  On October 4th we headed back to see Dr. Rhodes with a list of questions.  At this appointment we found out that Connor would have a “Cranial Vault Reconstruction” done on Thursday, December 8th and arranged his Procit injections.  As the next 2 months passed there were many sleepless nights and many days I sat and rocked Connor as I cried.  The waiting was the worst.

December 8th finally arrived and it was one of the worst and longest days of my life.  I remember waking Connor up at 5:15 in the morning and he was so happy, he never cried.  We arrived to the hospital at 6:30 am and we were taken to the holding area where I changed my little man into the small gown and waited for the doctors.  During the next 2 hours we met the doctors, anthestologists, OR nurse and signed the consent forms. The OR nurse, Kim, reassured us that we would get hourly updates from her and if we needed more we could call.  The time came, 8:30 am when one of the anthestologist said it is time to get started.  My eyes filled up with tears as Connor’s grandparents and Daddy gave him kisses.  Then I gave him kisses as I handed him over.  As we walked behind him, they continued straight as we turned right into the waiting room and he was smiling the whole time.  My husband and I were surrounded by many family members and friends during the next seven hours.  We got the call at 11:35 am saying that surgery had “officially” started.  After that we continued to get hourly positive updates for the next 3 hours.  At 2:40 pm we got the last update saying everything went GREAT and we would be able to see our little angel within the hour.  It was such a relief knowing we made it “to the other side.”  As promised by Dr. Rhodes we were able to give him kisses before he got settled into the PICU.  It felt so great to finally see him but he looked so different.  His head was no longer narrow it was nice and round.   He was so handsome.  Connor did not have any dressings or drains and no hair was shaved.  Once settled into the PICU, he was drinking pedialyte and I was able to hold him.  It felt amazing to be holding him for the first time since being on the other side.  By 8 o’clock that night Connor was drinking formula and resting comfortably.  We spent 2 nights and 3 days in the hospital.  We were able to go home Saturday afternoon with only one eye swollen shut.  Connor did not require a blood transfusion. so I’m so thankful he had 3 Procit injections prior to surgery.  Within a week Connor was back to his happy self rolling all over the floor, eating and sleeping through the night.

It has been 8 weeks post op and as each day passes Connor amazes me.  He is such a strong little man and nothing can get him down.  At his post op appointment, Dr. Rhodes was very pleased with his “newly shaped” head, his incsion and mostly his silly smile! I just pray that the rest of our “cranio journey” will continue with positive outcomes.  I’m so thankful to have found great support groups and I hope Connor’s success story can help other families as they begin their “cranio journey”.