Thursday, August 4, 2016

Welcoming Daphne, and Coping with a Wait and See Diagnosis

Three and a half months later, I finally have the energy (and the napping children) to write about the arrival of my youngest daughter, Daphne.

The pregnancy was an emotional roller coaster, given her prenatal diagnosis of an Agenesis of the Corpus Callosum (ACC). 

 (read about her ACC diagnosis HERE and HERE). 

However the labor itself, didn’t seem important or as profound in comparison to what followed.  When she was placed on my chest for the first time, I was filled with both wonder and worry.  I was in awe that she was actually here but I was still worried.  I was not only anxious about her diagnosis but because of the residual trauma left over from the birth of my first daughter.  Unlike my first birth experience, Daphne and I had instant skin-to-skin contact.  

She was pink and alert and, for all intents and purposes, a healthy babe.  After being reassured that Daphne was in fact breathing, I remember wracking my brain for what to do next.

So, I decided to sing.  I sang to her the songs that she heard me sing to her sister while in the womb.  The ones that came to mind were silly and if I had thought about it, I wouldn’t have chosen.  But there I was, holding my baby girl, singing Wheels on the Bus and ABCs.

From that point forward, she has amazed me.  Lifting her head and tossing herself over to nurse wasn’t an experience I had the first time around.  

Bringing her home and getting over the hump of post partum pains provided me some time and space to begin navigating her wait and see diagnosis as I sat sedentary, trapped by a sleeping newborn.
I glued myself to the online ACC babies support group Facebook page looking for clues about our future.  I followed the stories as this FB community discovered their babies' syndromes, seizures, and received tests and MRI’s.  Parents also shared pictures and anecdotes of their thriving babies.  

No two paths were alike. 
I began living all of these stories as if they were my own

I second guessed my decision to follow the recommendations of our neurologist and not order additional tests to rule out scary potentials unless necessary. 

I took it upon myself to put in the extra initiative, by convincing myself that to be a strong and educated parent, I needed to research all possible scenarios to know if something was wrong.  This included recommendations from support group members to watch YouTube videos of infantile spasms so I knew exactly what to look for.  Instead of feeling empowered and informed, I felt awful and confused.  It was as if all of a sudden I knew NOTHING about babies, or development.  

I stared down at Daphne, not breathing her in, but holding my breath.

There are many ways to cope with a wait and see diagnosis, and there isn’t a one-size fits all approach.  The continual participation in the ACC world was not working for me even though it works for others. 

I smothered my maternal instincts, at a time when I need them the most with facts and information.

Her baby days are short and I don’t want to miss them wallowing in the unknown and living in an alternate reality.  I backed off of Google and Facebook, cancelled an additional consult with another neurologist, and looked at my perfect baby, sighing with relief.  I began listening to my gut and right now, my gut says, we're good!

Instead of anxiety, I gave myself permission to feel joy, peace, and am COURAGEOUSLY, not cautiously optimistic about her future.  

The kid smiles almost all of the time and loves figuring out how to get anything and everything into her mouth.  She knows when to wake up exactly when her dad comes home in the evening and flashes him a wide mouth grin to welcome him.   

Once again, my children have reminded me the value of being present. 

So, how am I learning to cope with a wait-and-see diagnosis?

Like any other child in my care, I listen and respond to what she needs when she needs it. 

Baby giggles, smiles, and coos included.

Resource:  A book that helped me during this postpartum journey with Daphne's ACC was The Gift of Imperfection by Brene Brown. 


  1. Aww! What an adorable happy baby! And your attitude is beautiful and perfect. Congratulations to you and your whole family, Mary Sue!
    Much love,

    1. Thank you for the well wishes! Keeping this attitude has proven to take some discipline but well worth it. We've been enjoying being a family of four! :)

      Warmly, Mary Sue

  2. I admire your stance on this challenging situation, Penpal. I see you finding the bravery to face uncertainty in order to experience balance and presence in the moment. (That book has been deeply influential to me as well!) Sending love to all four of you, Katie

    1. xoxo Pan Pal. Thank you for your kind response. I miss you and I hope you are doing well!

      Mary Sue