When I was pregnant with Parker, we had the most awesome High Risk OB, Dr. Mirabile. He is unbelievably frank and at one time told us Parker would resemble an alien (very little body and very big head) at birth. Some might be offended, but we were fine with his honesty. He wasn’t far off. I’ve said tongue in cheek that Parker’s head shape went from alien to conehead and it now has a Klingon ridge.
The reason it was so large at birth was because of all of the cerebral spinal fluid accumulation in her head. It had no where to go because of the blockage between her 3rd & 4th ventricles. Because of this, her brain was severely compressed. It was a very fine sliver. I can say those words, but until you see the pictures of the dark grey fluid and lighter grey brain, you don’t truly grasp how little brain “fluff” there really wasn’t at birth.
The day after Parker was born she got a shunt that allowed the fluid to drain into her abdomen. Over time, most of the brain came back. However, there was a large fluid filled cystic structure (Schizencephaly) detected on scans at 6 months that basically took up space where her brain had atrophied. I saw the huge interhemispheric cystic structure, and it scared me. I googled again as one does when they get diagnostics. I prayed over time, the fluffing would continue and the cyst would dissipate.
It isn’t uncommon to have these large fluid spaces. I was pleased she had brain matter. And, I have always been happy with any accomplishment.
Time passed and earlier this year Parker started having pain episodes. She hadn’t had imaging in quite some time. So, once the pain became horrendous, we went to the ER. To my shock, the cystic structure was exactly the same as her 6 month mri.
We hypothesize Parker is having intermittent over-production malfunction of her shunt. Basically, your head has fluid, skull & brain. During her pain episodes, the shunt works too well and the fluid is over-draining and the brain cavity becomes dry, if you will. This omits one main component of the trifecta. Hence, Parker will scream, cry, plead for comfort, etc. As a parent, I pray no one will ever have to go through this.
So, over time Parkers’ skull plates fused over-lapping. Her brain grew at a rate faster than her skull. The remedy is cranial vault reconstruction. This would be by far the most serious, extensive surgery she would probably ever endure. I’m praying the skull will soon compensate and grow.
Balance.
theturtlemom 
I am 18, i have had 49 brain surgeries and I have had two of those surgeries, cranial expansions. I’m sorry your daughter has to have one. It’s about a 4 to 5 hour surgery. The second time I had one I was only in the PICU for 4 days and then moved to the regular floor for the rest of the week I was there. That may have been because we can’t stand the PICU here. It an open bay ICU. I had an ICP monitor and a blood drain placed because he oped the dura. They did not do that the first time. The second one was much more extensive than the first. The surgery is not as bad as many people think. It depends on the person. I had a PICC line placed for pain medicine. I will admit the first few days were horrible but things got better. I hope this helps. Your daughter is beautiful and she has been through so much. I am praying for her and your family.
Bless you! Thank you so much for your comment. I know that ultimately it is what she needs to progress. But, it’s a hard one to swallow. Again, I so much appreciate your response!
I’m a sucker for the brain pictures! Your before and after photos remind me so much of Miss Aria. You have a beautiful little girl.
When I saw your blog post I thought the same thing!!! The brain is such a funny organ. You just never know how it’s going to react.