History of Robert and Craniosynostosis

I forgot that many of you do not know anything about the surgery that Robert had...I'll give you some background on it...it is called Craniosynostosis -- here is a definition as taken from WebMD:

What is craniosynostosis?
A baby's skull has 5 thin bony plates that are held together by a fiber-like material called sutures. The sutures allow a baby's skull to expand as the brain grows. Over time, the sutures harden and close (fuse) the skull bones together. When a fetus or baby has craniosynostosis (craniostenosis), one or more of these sutures close too soon. This causes the baby's head to become abnormally shaped.

What causes craniosynostosis?
Doctors do not fully understand what causes craniosynostosis. Up to 20% of babies with craniosynostosis have inherited a genetic trait from one or both parents that results in the condition

(To go to the full WebMD article with full information click here)

At the age of 6 months, Robert had some minor delays and his head was flattening on the right rear side...the pediatrician of course told me it was due to positioning and sent me home with instructions to 'pin a rolled up towel to the back of his sleeper to force him to lay on the other side of his head". We did this for a couple of nights and Robert would wake up screaming in pain--it was obvious to me that he had a migraine. I went back to the doctor who continued to insist that I was not doing enough for my child nor trying hard enough...so I went for a second opinion. The doctor we saw order an immediate x-ray of Robert and we then about a week later received a diagnosis of Craniosynostosis.

This led us to a pediatric neurosurgeon, hassles with the insurance company, a reconstructive surgeon and my (now ex) mother in law who insisted it was MY fault that her grandson was deformed...while waiting for all the things to happen that were necessary (pre op appointments, approval from the insurance company, etc.) it became more obvious just how deformed he would've become if the surgery was not performed ASAP. His Left ear was on the back side of his head (instead of on the side of his head) and his eyes were unlevel...he had a 'lump' above his right eye, which the neurosurgeon explained was due to the brain growing that direction in compensation of not being able to grow 'normally' because of the craniosynostosis. (I had pictures that showed the deformities, but my exhusband kept those).

On December 14, 1992 we were scheduled to go in for his surgery...we were advised to give him only clear liquids until midnight. I gave him pear juice not thinking twice that I'd never given it to him before. At the hospital during his pre-operative assessment, as we watched he broke out in an awful rash...as we watched his whole body was covered in it within about an hour...They gave my husband and I MMR vaccines, certain that it was measles (it sure looked like it) and quarantined us to our own home for the next 72 hours until lab results confirmed (or not) that it was measles. Jumping through many hoops to get it scheduled so that we would not need to meet another HIGH insurance deductible, we were able to schedule surgery for New Years Eve 1992 (12/31/92). It was a very long 13 hour surgery (during which his sister was conceived! LOL). 10 plates, 66 screws and 3 stainless steel wires were placed to reshape his head and give the brain room to grow where it should've been to correct the deformities that had already occurred (and it worked!!) When the pressure on his brain was measured it was a 7 with 10 being the worst...so he had quite a bit of pressure on his brain...

This was my first born child and first experience with the medical community...it was HORRIFIC as there was no internet, there were no support groups, NOTHING! Even my mother in law was blaming me for this happening to her grandson--after all I MUST'VE done something wrong to cause this...

There is no known cause of craniosynostosis...it just happens...at the time that we had received Robert's diagnosis the odds of having a child with this "birth defect" were 1 in 100,000. In reading the above WebMD article the odds of having a child with craniosynostosis is 1 in 2000 to 2500.

Robert entered into early intervention services at the age of 18 months and has been in special education services ever since...I cannot say if it was related to the pressure on his brain from this or other occurrences in his childhood...

Oh and just for fun, I've gotta tell ya...At the age of 9 Robert was complaining of pain on one side...ends up he has a loose screw behind his right ear ... the bone never grew over it and you can manipulate the screw through his scalp if you know where it is....

So my 16 yr old has a screw loose!! LITERALLY! LOL What teenager can be told he has a loose screw and have it actually be true? ROTFLMAO...