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Sunday, February 6, 2011

Understanding Craniosyntosis

I'm quite hesitant to blog about this.. but since, my blog revolves on how I deal with anything about life, especially with my son.. I have to share this story of mine to you..
Jacob was born via cs delivery.. He had perfect shaped head from the day I gave birth up to months.. I lost track about this.. I never thought that I day, I wil have to deal and accept this fact about craniostenosis..

One fine day, since it's my mom who took care of bathing Jacob everyday.. They also worry and ask me about his head. That's is getting " matambok" I am mother and quite in denial about that fact - since my parents also experienced the same thing about me when I was still a baby.
They were telling stories that I have an opened "bumbunan" or fontanelles when I was a baby - same as with my dad when he was born as relayed by my Lola. They just took care of me not getting any bumps in my head. My mom's OB even wants me to put under observation since it's they first case. But my lola didn't approve of it - and now, no worries...
But when I had Jacob, all anxieties, worries came and crosses my mind so we decided to put him into a check up with a Pedia Neurologist. I searched the web and saw Dra. Fojas,  an expert in that field. I immediately ask for appintment at Makati Medical Center.
While waiting, lots of kids same as Jacob are on scheduled check-up visit with Dra. Fojas, but their cases are different from Jacob - ADHD, Cerebral Palsy, etc..
Dra. Fojas confirmed Jacob has Craniostenosis

Craniosynostosis, “Cranio" refers to Cranium: The upper portion of the skull. "Syn" to together, “ostosis” to the genesis of bone.

Craniosynostosis is a condition in which one or more of the fibrous sutures in an infant skull prematurely fuses by ossification,[1] thereby changing the growth pattern of the skull.[2] Because the skull cannot expand perpendicular to the fused suture, it compensates by growing more in the direction perpendicular to the open sutures.[2] The resulting growth pattern provides the necessary space for the growing brain, but results in an abnormal head shape and sometimes abnormal facial features.[2] In cases in which the compensation does not effectively provide enough space for the growing brain, craniosynostosis results in increased intracranial pressure leading possibly to visual impairment or an impairment of mental development combined with a significant reduction in IQ.[3]
Craniosynostosis is part of a syndrome in 15 to 40% of the patients, but it usually occurs as an isolated condition.[4][5

 To confirm with her diagnosis, she arranged us for a CT Scan of the Skull 3D at Asian Hospital Medical Center. We just gave Jacob a teaspoon of Benadryl so he could sleep during the examination. It took him almost 8 minutes for the test, but waiting time us feels like it's forever. Worryying about the results of the test.
At the end of the day, yes - he has Craniostenosis - specifically Turricephaly. It involves thebilateral  fusion of coronal sutures, thus gving a tall and broad head with narrow diameter.

Dra. Fojas, ask us if we want him to be on the OR Table for operation - to correct the shape of his head - just a corrective procedure - Jacob as no problem with or shows any delays in development if fact, we think he's even advance for his age. 
Me and my husband decided NO to the operation.. I'm so scared  of it - putting him again for operation (1st he had when he was almost 2 months old for Hernia), seeing him at the ICU after it... It's just a corrective procedure.. 
Jacob won't be able to experience SkinHead Haircut... just Mohawks..

Jacob's photos: 
newborn
3  months
4 months

1 yr old
1 and 3 months old
This topic is just for adding information about dealing with this condition.. How I became stronger as a mom to Jacob -- have to accept the fact, you can't have every good thing in the world - And still, thanking God that eventhough Jacob has craniostenosis - he is a normal and active kid - and we love him!




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