February 20th – The First Day

We all have days that are burned into our minds. Days that seem to carry with them their own identity as if this day is alive itself. The day becomes a friend, or perhaps a spited enemy. These days can bring us to life or can be days that bring indescribable dread, depending on what kind of story they’ve imprinted on our lives.

Some of these kinds of days are filled with smiles, joy, and laughter: a birthday, a wedding anniversary, a holiday.

Others totally encompass us like a thick, unending fog making it near impossible to navigate through no matter how quickly you try to drive. The weeks, days, and hours leading up to these kinds of days can be crippling. February 20th is one of those days for me.

This year as February 20th rolled around, I thought to myself “Wow! It’s been three years.” Three years since the feeling of numbness, fear, and uncertainty jumped in the driver’s seat (uninvited, mind you) and started driving me full speed down a road I never imagined I’d travel.

February 20th, 2015 was one of the most traumatic days in my life (so far). My husband  and I went in for our routine 20 week ultra sound to check in on our sweet little bundle of joy that was quietly knit away in my womb. Leading up to that appointment, I had an unexplainable sense of uneasiness about the pregnancy. Some might call it paranoia, others might call it motherly instinct. Either way, I distinctly remember feeling from early on in the pregnancy that something was different…something was “off”.

We went into the ultrasound room, my bladder so full I literally remember feeling like it was going to empty itself all over the hospital bed if the sonographer put one extra ounce of pressure on me! The tech was kind and cheerful as she asked us if we were going to find out the gender of our baby, to which we smiled and said “No! We want it to be a surprise.” Joining in on our excitement, she told us she would have us look away during “that part,” and she began the ultrasound.

She was zipping right along: arms, legs, torso, face, until she came to the brain. At this point, things slowed down. She checked. And rechecked. Took a few more angles. Checked again. I can still hear the buttons from the mouse and keyboard “click” “click” “click-click-click”ing in my head.  I felt uncomfortable (and not just because my bladder was full), but I tried to keep an upbeat spirit. She got quiet and the atmosphere in the room changed. There was a switch in the mood. Things felt heavy.

When I was finally allowed to get up and go to the bathroom (which was a relief!), she wouldn’t make eye contact with me. As we were leaving, I tried smiling and telling her thank you, but she didn’t seem to notice. The uneasiness was back and it was strong.

We had about an hour in between our ultrasound and follow up with the OB, so we left to grab some lunch. At this point, I think my husband and I both knew something was off, but neither of us want to bring it up. So, we ate our soup at Panera in a fake bliss, talking about all things except our littlest miracle I was carrying.

We arrived back at the hospital and were taken to our room. That wait seemed to last forever. Once the doctor walked in, before she could even say a word, the expression on her face said it all. Something was wrong. Something was seriously wrong.

“We need to talk,” she began.

“Is everything okay?” we asked. Of course it wasn’t. We could already sense that, but it seemed like the right thing to ask in the moment.

“No. The ultrasound shows that something isn’t right with your baby’s brain. We aren’t exactly sure what. But, this is serious and is something to worry about.”

My stomach dropped. Any color I may have had in my face left. My entire body went numb. I wanted to puke.

“Ok…what do we do?”

“We are sending you upstairs to see a high risk doctor. They are expecting you, so you can go ahead and head up there now.”

And so we did…and by “expecting” I guess she meant sit in the waiting room for an excruciating thirty minutes. We sat anxiously while doors opened and closed. Each time my heart racing in anticipation for them to call our name, and each time sinking when they didn’t. Until they finally did, and we somehow pushed ourselves out of the seats, picked up our feet and walked back.

It gets a little hazy here. Between my blood pressure being taken (because what better time to take someone’s blood pressure?!), answering questions about my family that had no other purpose than to take my mind off of the real reason we were there, I don’t remember much until the doctor walked in.

He explained to us that from the looks of the ultrasound, it appeared that our baby did not have a cerebellum. But, depending on how the baby was positioned during the original ultrasound, he needed to do repeat one to double check.

With my hands ice cold and the rest of my body numb, I reclined back for another look at our baby.

He began just like the sonographer had done just a few hours earlier. “Click,” “click,” “click”.

“I can see that your baby DOES have his/her cerebellum, but based on what I see, I think perhaps he or she is missing the Corpus Callosum.”

The WHAT?!

“Corpus Callosum (yeah say that 10x fast)…it is a tiny bundle of nerves that connects the two hemispheres of the brain. But, because of how the baby is positioned, I can’t be 100% sure. So, we are going to schedule an in-utero brain MRI.”

The doctor took some time to talk to us about Agenesis of the Corpus Callosum (ACC) and what it meant, how many people it affects, etc. I honestly don’t remember much except a few key things:

  1. It was rare(ish). I’m now learning it’s more common, but the spectrum is so varied.
  2. The spectrum literally included EVERYTHING from my baby being born in a vegetative state to never knowing something was missing.
  3. Sometimes ACC is connected to another syndrome, we won’t know until the baby is born and we do genetic testing. Here are few syndromes that might be connected, but don’t google them. We’ll cross that bridge when/if it comes. Also, if another syndrome is linked, depending on what the syndrome was, the baby may not make it.
  4. I was terrified.

After talking with many nurses and waiting an eternity, we finally had an MRI scheduled four weeks out, down at the Med Center. Four long, excruciating weeks.

“Try not to worry too much (SERIOUSLY?!) between now and then,” my doctor told me with a smile and a hug as we were leaving. So, I was left with that, and a few syndromes NOT to google, because looking at the pictures might cause more anxiety.

February 20th, 2015 was the day our journey with ACC began. This was the first day I had to walk around pretending things were okay, and knowing deep down that they weren’t. The first day when people asked me how my pregnancy was going – and that I looked great – and I had to smile and say things were “fine,” because if I alluded to anything else, I might collapse out of exhaustion from the sorrow I was carrying. The first time I felt the kicks of my baby, that once brought such joy and now brought such heartache. The first day of putting on fake cheerfulness when all I really wanted to do was crawl in a dark hole to escape this painful circumstance that had now become my reality. It was my first day of living with debilitating fear and haunting of the unknown. The first day of tough conversations with my husband about the “what ifs”. The first night of nightmares.

Each year February 20th rolls around and my memories play a cruel trick. The anxiety, fear, and numbness all return. I’m reminded of the uncertainty we faced then, and how the unknown is still a major piece of our daily life. I understand the argument that the unknown is really a part of all of our lives. That’s true. However, when you’re dealing with a medically fragile human, the unknown becomes so much more ambiguous.

Three years has done a lot to change me. While February 20th still came with it’s dark cloud for me this year, I was able to find a silver lining. I am beyond grateful that no doctor ever mentioned, not even once, terminating our pregnancy. It would have never been an option in our minds anyway, but I am so thankful that I was surrounded by doctors and other medical professionals who comforted, listened, and advocated for me from the start.

If you’ve read this far, bless your heart. I tend to get a little winded. Reliving and remembering that day (and actually writing it out) brings out all the feels. Thank you for reading, for caring, and for letting me be completely vulnerable.

 

 

 

 

12 comments

  1. As I watched your go through this gut wrenching time in your life, I mostly saw your face of courage, hope and love. Though my heart was hurting with and for you as I read the raw emotions of your journey, I felt deep gratitude, awe and admiration for your willingness to share the pain which others may experience and feel your healing support. Claire has an amazing, one-of-a-kind mom!

    Liked by 1 person

  2. Thanks for sharing, Bridget. It helps for many of us to know what you have been through and may have yet to go through. And for me personally, I look forward to learning about how best I can interact with Claire when I see her. I know we don’t see each other often but like to make the most of the times we do see all of you!

    Liked by 1 person

  3. I remember your mom asking me what I knew about ACC. I told her some of my favorite patients over the years have that diagnosis. I bet your family is cherished by all the professionals helping you on this journey. Thanks for sharing your dear Claire with me and for sharing your story.

    Liked by 1 person

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