Sunday, December 13, 2015

What the Doctors Can't Tell Me...

I went in for my 20week ultrasound for our second baby girl due in April.  My husband took the day off so the whole family could get our first glimpse together.  My pregnancy thus far was very uneventful and quite similar to my previous one, but without the first time mom anxiety.

The ultrasound tech was quieter than last time, didn't smile as much, and seemed to rush out at the end, tossing us the pictures as she left.  My husband made a comment that maybe she wasn't as friendly because this was our second baby? The midwives were attending births so the follow-up appointment was cancelled.  

I received a phone call that evening.

A laundry list of what was 'normal' was given to me first which put a pit in my stomach as I waited for the dreaded...BUT...and then it came.

 "We didn't get an image of the CSP, Cavum Septum Pellucidum, it's a part of the baby's brain. Call this number, and make an appointment with a 3D specialist so he can look at the CSP. We can get some better shots and you won't have to worry all weekend."

I hung up the phone and cried, telling my concerned daughter that I was worried that something was wrong with the baby's brain.  After reassuring myself that it's common to get pictures retaken, the anxiety eased and I prepared for my appointment feeling a bit silly about my overreaction. My best friend met me during her lunch break in the event that the appointment was eventful.

Unfortunately it was.  I weeped as they captured detailed pictures of my child's brain, knowing that they were looking a little too closely for everything to be alright.  The Radiologist came in after a long wait to read the results.  His prognosis was over the top dire. He asked my best friend while I was in the bathroom if he could discuss termination.  He already had his mind made up, this baby was not viable.  

  • Missing Corpus Callosum
  • Tear dropped shaped ventricles
  • Rocker Bottom foot (sign of a major chromosomal mishap)
  • Definite severe cognitive disability 
  • Possible Trisomy or major chromosomal abnormalities to blame
  • No changing it, fixing it, and no answers.   

Then he was gone. 

I was a puddle.  Incapable of functioning. My world shattered as our baby deemed unviable in just five minutes.  I was ready for the pregnancy and suffering to be over asap.  His message was received loud and clear.  It was Friday so I had an entire weekend to wait on moving forward, to sit with this awful news.  Our family grieved. 

My best friend took pictures of me and my baby after
our first devastating prognosis.
Every time the baby moved, my heart broke a little more.  I googled obsessively, learning EVERYTHING I could in the middle of the night and then sobbing myself back to sleep.  It all felt very surreal, and devastating as I made plans to honor our unborn child who only had suffering in her future.  I focused my energy on being brave for our unborn baby, my daughter, and husband. The weekend felt like a lifetime. 

Fast forward to five doctor's appointments later....

Turns out, our baby girl, does have a complete Agenesis of the Corpus Callosum (ACC) but perfectly normal baby feet.  This was a game changer, and a miracle that I thought incapable of happening. The follow-up appointments and genetic testing pointed to the ACC being isolated.  The range of outcomes are from normal neurodevelopment, to mild delays, to significant disabilities (pending on if there are other complications arise).  Not all can be determined prenatally.  The unknowns are vast and ACC is ultimately cursed with a "wait and see" prognosis.  However, our baby at 23 weeks in utero appears healthy otherwise. Unlike the first appointment, each appointment we had in the following week restored hope, and I began to understand that the brain is capable of amazing things.

I am ANGRY at the first doctor's premature prognosis, and the immense pain it caused our family.  However, the specialists at our follow-ups couldn't give us many answers about our little girl's developmental outcome.  My husband and I often left the appointments confused, disoriented, and frightened. 

How do we prepare!?   What can we expect!?  
Is she going to be okay?!  Are we going to be okay!? 

But then I realized, just like every child,  no specialist can fully predict his/her future and developmental path.  ALL children are born with their fair share of unknowns, challenges, and strengths.  ALL people are unique in mind, body, and soul.   

It's the wonderful and ugly part of parenthood.  
It's the wonderful and ugly part of life.  

Sometimes the only option is to wait and see

Once I accepted the inevitable unknown I now find our "wait and see" prognosis liberating and comforting. 

Anything could happen, including the good stuff.  

What we now know about our daughter at this point is limited to her anatomy. Her spirit, potential, interests, challenges, and delights cannot be detected on an ultrasound, fetal MRI, or genetic testing. I will not find a child who is just like mine on an ACC support group Facebook page, and  I will not find a child just like her anywhere else in the world.  She is her own person. 

My grieving has since lifted (unavoidable anxiety at every appointment will most likely remain), but never before have I been so excited to meet this special little person who has already shaken our world in a big way.  But for now, I can only wait and see what other lessons and gifts she has in store for us come spring.  

To find out more about ACC, please visit


  1. Thanks for sharing your incredible journey, Mary Sue! I am thinking of you and your baby girl and wishing you all good things. Sending hugs and love and support your way! Miss you xoxo--Maria C

  2. Mary Sue you are very brave and a lovely mother. I can't wait for your wonderful daughter's birth! She will be loved!

  3. Love you and your spirit! All children are special and perfect in their own way! I hope to meet her some day! Please keep me posted....proud of you and love you!

  4. Sending big loves your way! Thank you for this post, it must have been so difficult to write.