Paxton – Sagittal

 OLYMPUS DIGITAL CAMERAOur story with Craniosynostosis begins 12 hours after our son, Paxton was born. Paxton was born on March 21st after a great pregnancy and relatively easy delivery. Paxton was beautiful and my husband and I were so happy! We had no idea anything was wrong until 12 hours later when our doctor informed us that he possibly had a condition that would require surgery. Paxton was taken from us to have x-rays and a CT scan that confirmed what the doctor had told us. Paxton’s’ sagittal suture had fused in utero which could cause intracranial pressure and brain damage, if not corrected. We were referred to Children’s Mercy in Kansas City, Missouri. Our first appointment with the neurosurgeon was scheduled when Paxton was 5 days old. Dr. Igbase confirmed the diagnosis and gave us the option of 2 surgeries. The first involved waiting until he was 9 months old while the 2nd involved surgery before he was 3 months and wearing a helmet. We wanted to get the surgery over as soon as we could, safely. So we chose the option with helmet therapy.

      Paxton’s’ surgery was initially scheduled when he was 6 weeks old. However, it had to be rescheduled because he contracted viral meningitis when he was 5 weeks old and was transported to Children’s Mercy in Overland Park and spent four nerve-racking days in the hospital. After he recuperated, we scheduled surgery when he was 8 weeks old. Finally, the day came. May 22nd 2012, a day I will never forget. Our sweet little baby was in surgery for approximately 4 hours. We were finally able to see him about 6 hours after the nurses took him away… I was so happy to see him and you could immediately see a difference in the shape of his head.  He spent one rough night in the ICU after receiving a blood transfusion. The following day we were released to our Ronald McDonald House room! The next day he was fitted for the helmet and we received it and went home 2 days later.


The next 12 months went by so fast! I went back to work and life went on. Our precious baby boy grew so quickly! Trips to Kansas City every 3 weeks got a little exhausting but we always got great news when we went! Finally, on May 22nd (one year to the date of surgery) we took the helmet off for the very last time!! The past year and a half have completely changed me as a person. I have learned so much about myself and truly grown as a person. My husband and I have a stronger relationship with each other and with God. We have amazing family who were supportive to us through this trying time and were always there when we needed. We also have amazing friends, a few of whom I consider family, that supported us every step of the way! We are truly blessed to have our amazing son, whom I thank God for everyday!