Eagon – Sagittal

On 10-31-10 our precious Eagon was born.  I knew through the pregnancy that something just wasn’t right although my OBGYN said everything was normal.  Eagon was our 4th child.  I was in extreme pain throughout my entire pregnancy and the further along the worse it was.   Once Eagon was out I had no more  pain anywhere.  No back pain,  No sacral pain, No hip pain.  It was all gone.  I could walk freely. Shortly after his arrival I noticed Eagon had a weird looking fold of skin on the bridge of his nose like his forehead had been pushed down.  I then noticed a weird lumpy line down the middle of his head.  My husband assured me that everything was fine the doctors and nurses hadn’t said anything about it.  I just knew in my heart it wasn’t right.  We were about to be released from the hospital and the pediatrician came in and said I’ll want to see him in one week as he has some ridging on his head and it could be something called Craniosynostosis but for me not to worry because it could also have been caused by the trip through the birth canal and would fix itself.  My heart sank at that very moment because I knew in my heart it wasn’t normal and feared what would have to happen to “fix” such a thing.  We set out to meet a wonderful pair of doctor’s,  Dr. Pearson and Dr. Jackson.  They set the date for Eagon’s surgery. We got to the hospital the day before and had his blood work done.  We woke up the next morning to take him in for surgery and the doctor come and with unsettling news of Eagon’s blood work.  His clotting factors were off and he needed too see a hematologist before surgery.   We then met with the hematologist 2 months later for more blood work and found out that Eagon had a rare factor deficiency  “factor XII deficiency”.  Which causes blood clotting tests to show a problem but that there really is no problem with bleeding during or after surgery.  It was such a relief to hear that we could now move forward with the surgery again.  Eagon was starting to have seizures from the pressure on his brain which isn’t normally typical of someone diagnosed with sagittal craniosynostosis except for in Eagon’s case as he skull was closed during his time in the womb.  So his poor little brain had no room to grow since being in the womb.   Finally when Eagon was 9 months old we got to have the surgery to fix his skull.  I didn’t think I would take it as bad as I did only because I wanted so much to be on the other side of all of this.  It put a strain on our family and we wanted to be on the healing side of things months ago.  When we were finally permitted to see our lil Eagon my emotions went crazy.  I saw him lying there fading in and out of conciseness from the anesthesia and my heart broke for him.  I wanted to comfort him but didn’t know how.  His eyes and face started too swell and bruise, until one eye was fully swelled shut and the other was only left open a tiny bit.  Barely able to see me, he smiled at my voice and after that very smile it took no time for his swelling to recede and he was on his way home.  Eagon is now 15 months old and looks like a new man.  The transformation from before and after surgery was extreme.  No more egg shape to his head and no more seizures.  Other than a small speech delay, he’s had no set backs.  I can’t tell you how truly happy we are to finely be on “The other side”.  Through this journey we’ve come to realize the things that matter and the things that don’t.  Our family shares such a deeper bond having gone through this and I wouldn’t have it any other way.   To all the families out there who are now going through what we ourselves endured, you’re not alone.  All of us on the other side are here for you to comfort your fears the best we can.  It’s a tough road for any parent but the end result is amazing!  We’ll see you on the other side!!