The Chiari Journey

No Mother wants to hear from a doctor that their child is being referred to a Neurosurgeon.
Never in my life have I wanted to have a time machine to go back and re-do everything and just not have to deal with this horrible condition.

Let me start at the beginning.

My daughter was born on November 12 2007. She came out screaming as loud as possible and even the nurses laughed at how mad my daughter was when she was born.
Right away I noticed something wrong. She had the hardest time swallowing her milk. She would drink a little of her bottle and about 25% of what was in her mouth would actually get down her throat but the other 75% she would spit onto her bibs.
I started asking the doctor to do tests on her to see what would be causing this issue and every doctor I saw (at least 10 doctors in all) told me that babies have gag reflexes that aren't fully formed and she would grow out of it.
Well she did at 15 months I noticed she didn't have the problem anymore.
Then she was delayed on every milestone.
She sat up at 9 months
Crawled at 11 months
No Walking.
I eventually got her in the early on program through the school district in our area and by 21 months she was finally walking with their help.
I never thought once that she was carrying around a condition that would affect her from day one.

My daughter always has had delays and so I thought this would go hand in hand with her developmental delays in the learning department.
My daughter has struggled to learn the most basic things. Colors, shapes, numbers, letters, sounds, body parts. You name it my daughter has had the hardest time learning them.
It seemed to me she was just being stubborn and didn't want to put forth the effort.
I didn't even think it could be related to memory issues.

We started to potty train at the early age of 3 which for her I thought was a good time to start since she was walking and talking and able to tell us things.
We almost got to the point where she would be trained and then she would start having accidents again.
I thought it was because I let her go on her own too soon or my consistency wasn't there (but it was).
So I tried again and again and again and again and each time we would get to a point where I thought she was ready to understand her cues and go without me asking, she would fall right back to square one.
I tried EVERYTHING under the sun. Potty charts, rewards, 3 day potty method, underwear only, naked, sitting on the potty for a longer time and drinking. I tried every thing I could find on potty training.
Never did I think my daughter would not have sensations.

Then the final hit on the head. She always went # 2 on the potty well. NEVER any problems with that until late 2012 when she started having #2 accidents. This time I got scared.
What the heck is going on with my baby?
I took her straight to the doctor who referred me to a urologist.

The urologist ordered tests and found out she had a neurogenic bladder as well as a constipated bowel.
WOW.. shocker.
Then because of that the urologist ordered us to perform an MRI on her to figure out if she has a tethered cord.
http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm

I got a call 2 hours after the MRI was completed from the urologists office and this call changed my life FOREVER.
Your child is being referred to a neurosurgeon.
I asked what was wrong with her and he didn't tell me, said I had to wait til the neurosurgeon called me.
I panicked.
What did they find?
What is wrong with her?
Is there a tumor?
Is she going to be ok?
Did I do something wrong?

I got a call 1 hour later and heard those words. CHIARI MALFORMATION.
Starring me in the face. Tearing me down to a shriveling mess of tears and confusion.
At the very top of her MRI her brain was hanging into her spinal canal.

No words can describe the panic and utter relief I felt all at the same time.
We finally had answers to all her problems since birth.
Swallowing, missing her milestones, memory, balance, coordination, potty issues.
EVERYTHING under two words.

2 weeks later we met with an angel who vowed to help us.
She said my daughter has a tethered cord as well as chiari and she was going to help our little crazy girl.
We scheduled a surgery that day.
No waiting, no time to digest.
We had to get this done NOW.
So on Wednesday June 19th my daughter will be in the OR having a tethered cord release surgery.
Our doctor also ordered a 2nd MRI of my daughter's brain. Get a better look at her Chiari and see what we are dealing with.
The MRI was completed and came back 100% that she does in fact have chiari but a more severe case of type 1.
She has a type 1.5.
So that same way when we went for our 2nd appointment we scheduled our 2nd surgery and on August 14th 2013 from daughter will have her 2nd surgery to deal with the Chiari.
Not a cure but a bandaid to prevent further damage.

No Child should live with this.
No Child or Parent should be judged.
Join me in the fight to CONQUER CHIARI!

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm