Tuesday, December 17, 2013

Craniosynostosis

I was sitting on this very flat screened desktop computer the other night when I thought about my Blogging Friend, Serene. When I wondered how her sweet, Beautifully Unique "Cranio" baby, Jackson is doing. When I visited Serene's Blog in an effort to check up on them. When--as Elvis Presley was crooning "Here Comes Santa Claus" within my crazy head--I lost complete track of time. Because come on. Who hasn't stayed up past eleven attempting to encourage a Friend? I mean, really. And I felt this humble pang that I may be the only one among Serene's Blogging Friends who truly "gets" this family's craniosynostosis journey. Because my parents lived it. I put them through hell. I may blame having been born with craniosynostosis on my unwanted premature short-term memory loss and learning disabilities. But you know what? "It's a... terrible privilege.". In more ways than one. The very fact that my then-unsaved parents accepted Christ as their Lord and Savior due to my craniosynostosis. I am one out of 2,000. And, nearly thirty years later, I was staying up, as midnight silently lurked about, reading/commenting on a dear "Cranio" Mama's Blog. Tony Stark/Iron Man was right. One-hundred percent. "It's a... terrible privilege.".
 
{Taken from my Life Story!! As per usual, I made some changes for Beautifully Unique!! I hereby behold. Thoughts, feelings, and emotions on craniosynostosis from an adult "survivor"!!}
 
My scull did appear abnormally shaped, to say the least. (I might have described it as being "freakishly disfigured". But that is just me.) Because, eventually, the back of my skull--where parietal and occipital bones are located--protruded. It was a severe case. Our skilled neurosurgeon, Dr. J., had never ever witnessed such an unusually deformed skull in any baby at my age who was born with craniosynostosis. Based on research. The cause of this neurological birth defect is unknown. Sporadic. See, it is by "chance" that infants are ever born with craniosynostosis. Like the rolling of dice. Or some gambling game. In fact, this neurological birth defect affects one out of every 2,000 live births. Yes, one out of every 2,000 live births. I--among every other individual born with craniosynostosis--am like Heaven's poker game with chips, cards, chance, and money bet.
 
I must have been "chosen". For reasons beyond anybody's--beyond my own--comprehension. But not God's.
 
Alright!! Enough about me!! What am I, somebody who tends to make everything on this planet all about her?! Uh.... I work against that very character defect!! Moving on. This is an update {Of the sorts!!} on my Kindred Spirit "Cranio" Buddy, Jackson!! I wrote in Serene's comment that I'd "repost" her Blog post. Well.... It was very, very, very late!! Remember? I am not sure what I was thinking by writing that!! Anyway. Rather than reposting her entire Blog post, I will "cut to the chase" as that phrase goes!! Wait. As brevity is "not my style", I can't "cut to the chase"!! So. I will keep this post educational, as Serene's most certainly was!! Apparently, there are twain different surgical approaches for reconstructing sagittal craniosynostosis. "Total vault". And "endoscopic". I never knew that!! And of the twain forms of surgery used to reconstruct sagittal crainiosynostsis, Serene's first "Cranio" baby, Alayna had the more serious, invasive one--total vault--as she was older. The endoscopic form can only be done before four months old. Apparently, at Jackson's current age, the skull is only about 2 to 3 millimeters thick in certain places, allowing them to simply cut away the bone. However. By four months old, it is much thicker which is why the endoscopic form has to be done before then. I never knew that!! One day prior to Jackson's operation, he will get his blood drawn so that everything is set up in case that strong, resilient little dude needs a transfusion. I did. But my poor Mom cannot remember if my blood transfusions were because of the craniosynostosis.... Or congenital diaphragmatic hernia. And, if memory serves me correctly, it wasn't my own blood. Thank God for generous donors!! Apparently, there is only a 15% to 20% chance that Jackson will need any blood transfusions. His operation should take about an hour and a half from first cut to sewn up. There is a 90% chance that Jackson will not have to spend even one night in the P.I.C.U. . If all goes well with no problems or complications, they will get to leave on the second post-op day. Jackson is going to need a helmet for about six months after surgery. Alayna did not wear one. Call me crazy, which I am, but I think babies who wear helmets look adorable!! Seriously!! If they practiced the skull-reshaping helmets nearly thirty years ago, chances are, I would not have a small hill--Mt. Cranio--on top of my head!! Instead. Dr. J. simply used to apply tape measures around my skull!! I remember that!! Oddball alert!! I remember measuring my dolls' plastic heads!! I also vaguely recall what Dr. J. looked like!! He was an older gentleman, with glasses on his face. Ironically, Dr. J. had a balding scalp. I think!! Why is the helmet so vital? Based on Serene's Blog. The reason why the helmet is vital, is because it will hold the front and back of Jackson's head in place, allowing the brain, as it continues to grow, to push the side plates back out, rounding out Jackson's head naturally. Wow. I could have really benefitted from that helmet!! Perhaps then, I would not live with premature short-term memory loss? But then again. Would I possess a freakishly hard skull? I kind of rather like that!! Surgery is scheduled for January 3rd. Jackson will be exactly 7 weeks and 2 days old.
 
Dear Blogging Friends. Less invasive or not, craniosynostosis reconstruction surgery is a serious operation. Can you continue to keep Serene, Jackson, and this family in your prayers?
 
  

     
 
 
 

8 comments:

Ryker said...

As a Pediatric nurse I have taken carry of several babies with craniosynostosis and they have all recovered very well. Babies and kids are tough!

Raelyn said...

Ryker....
Thank-you for the comment, Friend!!
"As a Pediatric nurse I have taken care of several babies with craniosynostosis and they have all recovered very well. Babies and kids are tough!". I never knew that you have taken care of "Cranio" babies!! How neat!! Most of the time, whenever I mention craniosynostosis, nobody knows about it!! ;op


Dip-Dip and the Bridge said...

Hope Jackson does very well and the helmet is a success.
Lynne x

Raelyn said...

Lynne....
Thank-you for the comment!!
"Hope Jackson does very well and the helmet is a success.". I second that!! ;op

bbes tribe said...

Raelyn, thsnk you for visiting us. Jackson and family are fortunate to know you. I am sure you have been very helpful. And supportive. I believe you are very special person. I enjoy your poets.
Barb and the furkids

Raelyn said...

Barb and the furkids....
Thank-you for commenting, Friend!!
Your welcome for visiting!! I like your Blog!! ;)
"Jackson and family are fortunate to know you. I am sure you have been very helpful. And supportive. I believe you are a very special person.". Thanks.... ;op

Serene said...

Thanks for your sweet post my friend! You are always welcome to re-post or link to anything on my blog.

Well, we are down to less than 2 weeks! I know he'll be okay, but I still hate that he need surgery.

You are wonderful!

Raelyn said...

Serene....
Thank-you for the comment, Friend!!
You're welcome!! ;)
Less than twain weeks.... Anticipating entrusting your Beautifully Unique "Cranio" baby to a neurosurgeon never gets easy.... You are in our prayers, Friend!! Jackson will be okay. Surgeons' skills--and God's protection!!--is incredible!! ;op