Jack – Sagittal

2We always thought Jack had an odd head shape.  His head was very narrow and he had a prominent forehead.  We asked about it at every doctor appointment.   At his 4 month appointment, we finally got a recommendation to see a craniofacial specialist.

We made the appointment to see the specialist and prepared ourselves for a helmet worst case.  Within minutes of Jack’s evaluation, the doctor was explaining sutures and how sometimes they prematurely fuse and Jack’s odd head shape was most likely due to his sagittal suture being fused.  I was barely processing what was being said.  My husband asked the hard question, “How do we fix this?”  The only course of action was surgery.  What?  No helmet?  Surgery?  I wasn’t prepared to hear that at all.  We were told we would be contacted to have a CT scan scheduled within the next couple of weeks and, if confirmed via the CT scan, surgery would be scheduled between 6-8 months old.  Of course the CT scan confirmed the premature fusing of Jack’s sagittal suture.

We were scheduled for surgery 2 weeks after Jack turned 6 months old.  I began educating myself about craniosynostosis, planning for surgery day, and smothering Jack with as much love as I could.  We also participated in a voluntary study that our doctor was performing which required an MRI scan.  We felt good about doing the extra scan to help give back so other kids can benefit from the research.

When the big day finally arrived, Jack woke up with a runny nose and cough.  We were told he needed to be healthy for surgery.  He wasn’t that sick so hoped we could still go ahead.  Unfortunately, it was determined he had too much congestion in his lungs and we needed to reschedule.  I was crushed.  I was emotionally prepared for that day to happen and to have it postponed was a complete blow.  So we gathered ourselves and set a new date which was a very long 18 days later.

Finally, surgery day was upon us again and this time no congestion so Jack could have his procedure.  The first update call from the operating room took longer to get than we anticipated.  They had problems placing Jack’s arterial line but luckily everything else went smoothly.  We were able to see Jack after his 5.5 hour surgery while he was being rolled out of the operating room on his way to PICU.  It was such a wonderful moment and we were grateful that our doctor let us see him at that point.

Jack’s surgery was on a Monday.  He slept for the better part of the next 2 days.   Wednesday morning his drainage tubes came out and that afternoon his bandages came off.  His eyes were swollen shut but he began eating his bottles and was more alert.  By Thursday morning he could see out of one eye and we were heading home before noon that day.  His other eye opened up on Friday and Jack was smiling, laughing, and playing as his usual self.  Such a relief!  We made it!

The care we received at Children’s Hospital of Wisconsin was beyond exceptional and the talent of our doctors and staff is amazing.  We are truly blessed to be on the other side of Jack’s surgery.  My advice to others facing any questions with regards to your children is to be tenacious.  If something doesn’t feel right then push until your questions are answered and you feel satisfied.  And find support!  You need to be strong for your child so you need someone to be there for you.  The anticipation is the worst part but it’s over before you know it.   Good luck to everyone else facing this surgery.