From the Heart of a Parent: Spina Bifida? This is Not What We Ordered

From the Heart of a Parent: Spina Bifida? This is Not What We Ordered

Baby #2, 20 week ultrasound.  Been there done that, just tell us what it is…boy or girl!!  For those that have yet to experience the MEGA 20 week ultrasound it’s almost like an old school video game.  You know that sound it makes when you’ve zapped something on the screen or the sound Pac Man makes munching up those dots?  Imagine you’re laying there, belly out gel on, and some dude is taking picture after picture of your baby.  Zap after zap.  Just tell us, boy or girl! That’s all we want to know!

Then it’s here, the big reveal!  “It’s a girl!  Yay!  We’ve already got a girl so we know everything about em! We’re good to go, let’s go tell everyone!”  Now we’re in the lobby waiting on the “Congratulations” packet and the cd of all her wonderful images!  “Mr. and Mrs. Vandrell, the radiologist needs to take a few more pictures.”  In that moment I NEVER thought anything of it.  Maybe the technician we had was new and needed some help, I’m ok with that!

Zapping away, I began to think differently.  Why is Mr. Radiologist concentrating on the same spot over and over and over again?  I’m no OB guru but I’m smart enough to know the spot in question is her brain, Then Mr. Radiologist, in all his professionalism, tells us we’ll need to consult with our doctor because there is something he sees that he’s not ok with.  I immediately look at my husband and if you know my husband that was not going to fly with him.  You’re not going to scare us half to death and leave us to schedule an appointment with our doctor.  Fearing for his life Mr. Radiologist tells us that he sees a problem with her brain.  He totally redeems himself and gets our doctor on the phone.  Still in the ultrasound room, on speaker phone, our doctor tells us our baby has too much fluid on her brain causing her ventricles to be enlarged.  This could be caused by a number of things but one is your baby might have Spina Bifida.   Hearing that diagnosis, or any diagnosis for that matter, over the phone, plays tricks with you.  At least in person we could have seen the expression on her face or saw pain or hope in her eyes.  I’ve heard people say that in an instance everything changed….that was our instance.

A LOT of ‘Spina Bifida’ internet searches took place after that.  In full disclosure I searched both articles AND images.  I know people say not to but for me it was inevitable. There was no force strong enough to stop my curiosity and fears.  What happens is in the first 30 days of pregnancy, part of the baby’s spine does not completely close.  This causes excess spinal fluid to collect in the head (hydrocephalus).  Also, the opening on the baby’s back exposes nerves that need to be put back into the spinal column and closed up.  Until recently babies with Spina Bifida had to wait until after they’re born to receive their closures but now this is possible while the mother is still pregnant, in hopes of causing less damage.

Life moved pretty fast after that.  Amniocentesis (LOOOOONG needle), consultation at Children’s Hospital Vanderbilt in Nashville for Fetal Repair Surgery (Lucy was a candidate, that’s what we named her!), arrange logistics at home for our other daughter Zoe (I missed her so much!), then back to Vandy for surgery (February 14, 2012).  Lucy was the size of a soda can when they performed surgery on her back.  Because the surgery was still considered fairly new we had a lot of medical professionals drooling over the chance to be in the room to witness the procedure.  Lucy’s closure went so well that the video they took was later used as a teaching tool at a conference in New Zealand (we’re still waiting on those royalty checks!).  After a week of recovery in the hospital I returned home where I remained on bed rest.  Three and a half months later, Happy Birthday Lucy!

“I would give anything to reassure them, and to let those mommy’s know they did nothing wrong.” — Katie Vandrell, Lucy’s Mom

After everything was said and done, looking back on it all makes me extremely proud.  Proud to be a mommy, proud to have 2 amazingly beautiful and healthy girls, and proud of the decisions my husband and I made along the way.  Don’t be fooled in the way I tell our story.  I cried, blamed myself, cried, took out my anger on all the wrong people, took everything I read on the internet as fact, and cried some more.  The beginning of her diagnosis was the scariest times of my life, the unknown and the time I had with just my thoughts could have killed me.  Lucy is now 2 ½ and thriving beyond belief!  She does have a shunt to help control her hydrocephalus and utilizes small ankle braces and a walker.   I can’t help but think about the families who will soon be living out some of the chapters of our book.  I would give anything to reassure them, and to let those mommy’s know they did nothing wrong.  I would want them to meet Lucy and see what Spina Bifida REALLY looks like.

Below are a couple videos highlighting the success Lucy is having beating the odds!

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