Meet Wyatt! His Story with Sagittal Craniosynostosis

As we continue on with craniofacial awareness this September I am honored to share Wyatt’s story with you.  Wyatt was diagnosed with Sagittal Craniosynostosis.  The sagittal suture runs lengthwise on the top of the skull.  Sagittal synostosis is the most common type of craniosynostosis, affecting 1 in 2,000.  Visual characteristics of sagittal synostosis include an increased fullness of the forehead and an elongated head shape.

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Wyatt’s Story with Sagittal Craniosynostosis

Submitted by:  Christy Davidson

14169715_1067323996697259_380566784_n-pngMy son Wyatt was diagnosed at the tender age of 2 months old with Sagittal cranio.  I remember that day like it happened yesterday, I had called the pediatrician because Wyatt was sick. We went in but didn’t get to see our normal Dr.  As soon as the new Dr. saw my son he told me that he would need surgery and referred me to a neurosurgeon.

I was devastated!  In the beginning I knew something was odd about my son’s head, but his Dr. just kept telling me that it was fine and that his sutures were overlapped from birth.  I was so mad that she just shrugged me off like that.

September 2015: we went for our first apt with the neurosurgeon which was 3 hours away from our hometown.  They looked at him and told me he had sagittal craniosynostosis, but they wanted to be sure and confirmed with a CT scan.  We came home devastated.   But, of course I wanted to learn everything I could about it!  So I researched and cried, and researched some more.

We went back two weeks later for CT and Ophthalmology appointments to check for intracranial pressure.  They had initially told me he would need to be sedated for the CT, but he ended up sleeping through the entire thing, which was a huge relief!  Our appointments were in Morgantown and we had to stay overnight for two days.  Two days away from my other children and husband was hard.  I was so grateful my sister in law stepped up and helped me in every way she could so that my husband didn’t have to miss work.14159689_1067323936697265_911601099_n-png

We came home and surgery was scheduled for Oct 3rd.  We had to go back one more time so that they could do blood work and all the pre op stuff.  They had to take Wyatt’s blood three different times because it kept clotting!  It broke my heart in a million pieces because he just screamed.  I wanted so badly to say, “NO IM NOT DOING IT”, but I had no choice.

14218394_1067323950030597_1878857061_n-pngThe morning of surgery, Oct 3rd, I’d had little to no sleep as we dove the stressful 3 hours to the hospital where they took my son. I remember feeling like a part of me was missing when I handed him over to the surgeons.  All I could think is “What if he cried for me?”, “What if he needed me?”.  His surgery lasted 6 hours and I just remember being so sick!!!  The Dr. came to find us two times to tell us he was doing fine.  They had to cut my son from ear to ear and remove not only a strip from the top of his head but they removed a large portion of his forehead as well.  They had told us that he would be on a vent the first day, but things went better than planned and he wasn’t.   They told me his eyes would swell shut, and again, things went much better than planned, they never swelled shut!  They told me that he would need a blood transfusion during surgery, but he didn’t.  They told me that he wouldn’t eat the first day but he was eating 3 hours later!  We couldn’t believe it.

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The hardest part for me was the night after surgery.  They didn’t want me to feed him again but I knew that was what he wanted!  He screamed and screamed and for the first time since my father in laws death I saw my husband cry!!!!  They managed my sons pain with loratab, and Tylenol.  He did absolutely amazing!  I never left his side.

 

To me he is definition of a hero.  We came home 3 days later and he was his smiling self.  Although night time was still hard.  He screamed all night for the first few nights.  He was on loratab for about 6 days after he came home.

 

I hope that somehow my story can help someone else. Wyatt is now 1 and doing great! He suffered no brain damage or any delays.  He’s the happiest little boy I’ve honestly ever seen and we are SOOO blessed that he’s ours!

 

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