Wednesday, February 12, 2014

From A Girl Named Charlie: Upon Diagnosis

If you've somehow stumbled upon this blog after doing a Google search, welcome!  

You may have just been told that your child has a neural tube defect called Spina Bifida. Or maybe you're the family member or friend of someone who has just received this devastating news.  Either way, I'm so glad you're here, even if it had to be under these circumstances.

When my doctor said, "There were some abnormalities on the ultrasound that are consistent with Spina Bifida," I felt like I was going to die.  I wanted to.  I quite literally felt like the whole world had stopped and thrown me into a raging whirlwind of fear, grief, and uncertainty.  For two days, I wept, prayed, mourned and wept some more.  I grieved the loss of the baby I thought I was carrying and instead felt pregnant with a diagnosis rather than a tiny, little person.  I craved the days of my pregnancy before the diagnosis with an unimaginable desperation.  For the first time in my life, I cried out in my sleep, waking myself up multiple times that first night sobbing.  I went to bed with a headache and woke up with a migraine.  

20 Weeks
October 6, 2011

And then my husband, to whom I will forever and ever credit with pulling me up out of my funk, said this to me:

"Cheer up, Charlie.  This isn't the end of the world."  

That was all I needed to hear.  I slowly began putting on my game face and quickly determined that knowledge is indeed powerful.  With that being said, here is what we did in the immediate days, weeks, and months following Liv's diagnosis that were integral in shaping our positive attitudes and inspiring confidence in our ability to be parents to this precious little person:
1.  Immediately upon diagnosis, we went to Maternal Fetal Medicine where the presence of SB was confirmed by a perinatologist.  This is just a fancy name for Specialist OBGYN.  Don't be intimidated.  

2.  After getting a confirmation diagnosis, we then asked to be referred to a Pediatric NEUROSURGEON.  This is important because many times people are mistakenly referred to a Pediatric Neurologist, which is totally different.  They know nothing about outcomes with SB.  Trust me.

3.  Once we spoke to the Pediatric Neurosurgeon, I began researching and reading, absorbing everything I possibly could about Spina Bifida.  I bought two books on Amazon: Children with Spina Bifida: A Parent's Guide and another memoir written in the early 90's by a father of a son wtih SB.  It wasn't nearly as helpful, so I'm not going to bother sharing the title.  Here are some other invaluable resources to check out:

Spina Bifida Kids on Babycenter's website was by far the most useful resource for me.  Many of the parents who post have blogs and usually you can find them in the signature lines of each person when they post a message or comment.  This is where I ultimately found hope and confidence that life with SB wasn't going to be the awful, sad experience I initially thought.  

4.  Ask questions.  Write them down.  You'll forget them if you don't.  You'll wake up in the middle of the night and kick yourself because there was something you wanted to know that you forgot to inquire about.  

5.  Put together a binder.  Inside it, you'll want to keep any information, handouts, confirmations, reports, anything the doctors give you.  Eventually, you'll see a multitude of specialists and you'll want to keep all that stuff straight.  Plus, you can put your questions in here and carry it all with you to your appointments.  Did I mention you need to write down your questions as you think of them?

6.  Don't be afraid to kindly ask your doctors, especially the neurosurgeon, to explain things to you in a different way.  Sometimes they forget that not everyone is familiar with terms like "corpus callosum" and "myelomeningocele."  I've found that they are always happy to re-explain things to me if needed.  (Which it probably won't be since you'll be a researchin', technical-jargon usin' fool in no time.)

There were other things we could have done that, in hindsight, would have given us even more reassurance about the future of our sweet little Liv.  We didn't contact any other parents of little ones with SB.  At the time, it was just too overwhelming.  I wasn't ready to face an actual person with this defect when I didn't quite feel capable of dealing with it myself.  Nineteen months into this journey, I wish I would have.  I really think it would have helped.  Reaching out to other members in our immediate community through our local Spina Bifida chapter would have also given usa good support network on which to lean during my pregnancy.    

I hope you've somehow been given some measure of comfort by reading this, no matter who you are or where you're at on your SB journey.  If this is all just starting for you, please remember:

 Everything is going to be okay.  I promise.  It will.


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