stories - Clarisse fanning (part 1)

​My son and daughter were both diagnosed with a condition called Chiari Malformation several years ago.  Our daughter was originally diagnosed with Scoliosis at 5 1/2, and we went in for a routine check up at just before her 7th birthday.  At this check up, they told us her curve had increased significantly, with no growth in height, which made them concerned as to why her curve increased.  They said we would need an MRI to rule out a "very rare" condition (Less than 3% chance) but at the very least, she was at risk for spinal fusion surgery for her scoliosis, and needed to be fitted for a brace.  The thought of having my 7 year old daughter have spinal fusion surgery was terrifying, knowing it would just be one of many surgeries because of her young age.  My husband and I prayed  for a miracle that her scoliosis would somehow stabilize, and we could spare her a life of surgeries.  We went ahead with the MRI to rule out a rare condition, all the while concerned about the future held.  

A week or so after the MRI, we had her follow up appointment with her orthopedic surgeon who was following her Scoliosis.  He confirmed she had the "rare" condition he was concerned about, Chiari Malformation.  He had already called over a referral to a Neurosurgeon and we needed to meet with him as soon as they had an opening.  My husband and I had no idea what Chiari Malformation was.  We couldn't even pronounce the term.  The following days were rough, waiting and waiting and waiting some more on a pediatric neurosurgeon to call back.  Then, Gods Faithfulness #1 happened.  A good friend whom I hadn't seen in years reached out to me out of the blue.  He had been fighting a very rare form of brain cancer the year prior, and only 1 neurosurgeon would perform his surgery.   This neurosurgeon saved his life. It hit me!  Ask him who his neurosurgeon was, and THATS who my girl would see!  He has to be the best!  Who cares if he isn't a pediatric neurosurgeon.  That must be why this friend I hadn't heard from in years called, right?  So, I ask him for the information, and got right on the phone.  I tried and tried to get in touch with this amazing surgeon, but his office wouldn't talk to me without a referral from her Dr.  I couldn't get her Dr. to call me back.  I tried and tried, to no avail.  Then, Gods Faithfulness #2.  While trying to locate her MRI images to try to send it to this Dr myself, it starts to rain on me.  I'm standing outside my car, in the pouring rain, and I scream "REALLY GOD?!  REALLY!  I'm trying to help my kid, and now it's raining on me.  I GIVE UP!!  REALLY!  I SURRENDER!  YOU TAKE CARE OF IT!".  I'm not kidding you, not even a minute later, the phone rings.  Not only is it the Neurosurgeons office, but it is the Neurosurgeon my friend used that I had been trying to get a hold of!  HE is the pediatric neurosurgeon the original orthopedic surgeon referred to!  They said they reviewed the images from the referring doctor, and they wanted to see her ASAP.  

When we got to the appt with the neurosurgeon, he had our newly 7 year old daughter do a bunch of motor skills tests.  He talked to us about her condition, and the fact that her chiari malformation had essentially cut off a good portion of spinal fluid flow to her brain.  He was surprised she hadn't lost all motor function, because her spinal cord was at max capacity, and she shouldn't be able to walk.  He suggested we schedule the surgery right away, and he had an opening in 2 weeks.  We didn't have time to think, or research, or anything.  All we knew was she was at risk for losing motor function.  On the way home, I sat in silence.  My husband asked me what I was thinking, and I burst into tears saying ; "What does this mean? Neurosurgeon?  She needs brain surgery?  I thought she had scoliosis.  She's at risk of losing all motor function if we don't get this done ASAP?!"  (God's faithfulness sometimes comes in the form of our spouses.)  My husband so sweetly reminded me we prayed for a miracle;  For our daughter to not have to have spinal fusions her whole life.  This may not be the answer we wanted, but it's the answer God gave us for an extremely difficult situation.  He is allowing us to have this brain surgery, potentially increasing her spinal fluid flow to her brain, shrinking her spinal cord down to the "normal" size, and correcting her scoliosis.  It's fixable.  As scary as this situation was that we were facing, we knew God was with us on this journey.  She stayed in the ICU for 4 days, and we were able to take her home on day 5.  On day 6 post op, the first morning of being home, she woke me up screaming, and sounding terrified.  I ran to her room to find her crying because she could feel her legs, and that just wasn't normal!  I said to her "what do you mean you can feel your legs".  "Well Mama", she says, "every morning, I have to wake up my legs because they sleep when I sleep.  So every morning I wake them, but this morning they were already awake!  Why mom!  Why didn't they sleep?"  I had to explain to her that sleeping legs are not normal.  Legs not falling asleep, that's normal.  My husband was right. (Don't tell him I said that).  My daughter showing scoliosis symptoms allowed us to see a bigger picture.  God's faithfulness allowed us to walk a very scary path to surgery to fix what we didn't even know was wrong with her...but He did.