Jack – Sagittal

Helmet loveCraniosynostosis was a term we had never heard of until Jack’s 2 month doctor visit. There was nothing of concern with Jack up until the point of the doctor and I reviewed his growth percentiles. His height and weight were aligned as they like to see however, his head was coming in at 99%. At first I laughed thinking wow he has a large head. Then the Dr. asked a few questions concerning the size of our family heads and if we tend to have heads of larger scale. Being that the answer was no I asked the Dr. what his thoughts were in asking. He right away expressed concern of Craniosynostosis based on the head percentiles of Jack. He at first suggested waiting until Jack’s 4 month appointment and reviewing the percentiles again, since to the eye Jack’s head shape was not too elongated yet. After the Dr. and I discussed more in depth we both agreed that Jack’s head was slightly more narrow and long then round. Based on this “just to be safe” we scheduled Jack’s CT scan for the following week. In anticipation that the results could be positive, my husband and I researched the defect and all possible hospitals for surgery. Living in Arkansas at this time we discovered St. Louis Children’s was a 5 hr drive and also had the endoscopic surgery option if qualifying. A few days later we received the expected call and news that Jack’s Sagittal suture did in fact fuse together and the referral for St. Louis Children’s was submitted. We were able to get Jack in for an appointment with Dr. Smyth and Dr. Patel at St. Louis Children’s the following week. Jack did in fact qualify for Endoscopic surgery which was the option we chose. The surgery would correct the fused suture but a helmet for head reshaping would be needed until Jack turns 1. Further scans will be given at that time to evaluate natural closure of the opened suture. Surgery was scheduled for 3 days before Jack turned 3 months (3 months being the most common cut off for this surgery). As all parent’s can attest the time while in surgery was a very difficult time for us however, the Doctors, Hospital and treatment were exceptional. Everything with surgery went as planned so Jack had to stay only 24 hrs in the hospital before being released. He received his helmet about 3 days post surgery. Jack is now almost 7 months and doing great. His head shape is over correcting at this point and have just a few months left of the helmet (ever though the helmet does not even bother him!) Jack cried pretty much non stop for the first 3 months of his life and often clawed at this head. Although they say he should not have had any pain from this I believe he did. He had never smiled and laughed as much as he did only 24 hrs after surgery and he has not stopped since :) We thank everyone for all the thoughts and prayers and for Cranio Care Bears for bringing so much love and hope to all families going through this. It is also great to hear the success of all of these beautiful babies. We thank you so much! Best, Megan Overbey Jack’s Mother

just out of surgeryleaving hospital 24 hrs after surgeryhelmet fitting1 month post surgery