We Are Worthy To Grieve: TFMR

By: Charlie’s Mom

I ALWAYS dreamed of being a mom, and then it happened.  My beautiful baby girl Charlie, a dream come true.  This is how I begin my story, when I chose to tell it.  I don’t divulge my “secret” easily to just anyone.  Usually the only people I feel a little comfortable telling are either a medical professional bound by HIPAA, a fellow mom struggling with a similar situation, a perfect stranger, or a like-minded friend. 

I cringe when I think of what people may think of me when I tell them that my perfect little girl, who gave me a high five on one of our first ultrasounds, was deemed “incompatible with life.” 

That defining moment still stings as I recall the doctor advising me that only about 5 percent of babies with Charlie’s diagnosis survive to term or live birth.  And then he went on to say that those who do survive a median lifespan of 5-15 days have a short lifetime of heroic measures which ultimately will end in hospice until death.  Hospice.  That is an unimaginable horrific word when talking about the baby kicking inside you, the baby you already feel you love with all of your heart.

Never, ever had I imagined a termination would be part of my story.  After all, I wanted to be a mom. 

The first sign that something was wrong was at my first ultrasound.  Charlie was measuring small or behind size at 6 weeks.  My sister, who was just trying to make me feel better, stated that “at least you are losing the baby early, and not the alternative of finding out that she has a trisomy or any other life threatening diagnosis.”  And that I, “won’t have to choose to terminate, that I will just lose the pregnancy naturally.”  I had never thought of that. That happens?  I mean everyone has heard of Down Syndrome, but those babies end up living a good life, right? 

While I appreciated a listening ear, I quickly told her with no conviction that I could NEVER terminate my precious baby.  No way could I elect to choose the day that my baby girl would pass.  Those words haunted me 6 weeks later.

Charlie’s twelve week nuchal fold ultrasound showed hydrops fetalis with cystic hygromas, a death sentence.  Almost all babies with this condition die in utero.  I needed to know her exact diagnosis so I elected to undergo a CVS (chorionic villi sampling).  The results came back even more ominous.  Charlie was diagnosed with full Trisomy 18.  A million emotions, feelings and thoughts flooded my head and heart.  I did not want my baby to suffer. 

And after the fog of information cleared, we decided that for our baby and our family, we had to face saying goodbye early.  It was soul crushing.  Life will never be the same for us again.  We realized in the end that we chose a lifetime of pain so that she would not have to suffer a moment of it in hers. 

Almost immediately, I started to feel the shame of this decision; it is hard not to.  The social stigma of this procedure is intense.  Every orderly, nurse and doctor I encountered through this process, I made sure that I made it clear to them that I would never do this if it wasn’t for the T18 diagnosis. 

Three years later, I still look the person in the eye to make sure that they hear me and understand that she was wanted, that I still have a valid reason to mourn her, and that I am not a bad mother for choosing this ending.

Before Charlie, I never knew if I was pro-choice or pro-life.  Even though my heart would just ache terribly when I would hear about someone in my life that had had an abortion, and thinking about all of those wonderful families that were patiently waiting to adopt, I still couldn’t get on board with eliminating that choice for everyone else.  I mean, I knew that I could never have an abortion myself, or so I thought. 

Because you don’t truly know what you would do until you are actually in that situation.  The world looks very different when you are standing on the edge of a black hole.

Talking to a health professional about my pregnancy interruption feels like two worlds apart compared to talking to a close family member.  I care way more about what that family member will think and am more concerned about how the news will affect them and our relationship.  Mostly I am afraid that they will not understand my choice because they haven’t been there.  Because I didn’t understand it until I was there.  And I hope that they never ever have to go there either.

So, I chose to remain anonymous until this day.  Maybe one day I will have the guts to speak publicly and maybe I won’t. 

Having guilt does not mean that I made a mistake, it is just hard not to worry about how all my friends and family will react.  Will they disown me?  Will they say hurtful things to me?  Can I survive that?

I am very proud of my fellow loss moms that have had a pregnancy interruption and are able to speak out publicly.  They are some of the bravest women I know.  Our stories need to be heard. 

All health care professionals need to understand that our choice was extremely hard and that yes, we do still value our child’s memory and short life.  That we are allowed and worthy to grieve like any other loss mom.  The whole world must sit back and realize that until you know the actual hell hole of emotions and grief and shame that is associated with being a mother of a child not meant for Earth, you know nothing.  And thank you to the brave souls that can help spread that message.  I am so sorry that I am not ready to join your ranks, yet.

~Charlie’s Mom

About Charlie’s Mom

Charlie’s Mom is a loving mother of two, Charlie and her rainbow brother.  She has actively participated in Share chapters, as a peer companion and now as a founder of a new Share chapter.  Her mission is to provide help and support to all other families that experience loss, especially for those whom find themselves with a poor prenatal diagnosis.  She’s also a wife, master of excel spreadsheets, and dog mom to two furry little guys.

These are controversial topics and many that people don’t realize other families face.

Share’s mission is to support those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth, or in the first few months of life. Share does not take a political stand on these issues. Share is not responsible for guiding or counseling families in their decision-making process. We all grieve and mourn for our babies. Some of our parents have had to choose the day that they were going to lose their baby. But the truth is still: each family wanted and love their babies. We all search for support, healing and hope. All grieving parents deserve that.

As a support organization it is always our goal to provide a safe and compassionate place for every family who has suffered the great loss of their baby.

We hope this conversation allows for continued healing and an understanding from others of the great need for long-term support for every family making difficult decisions. If you are in need of support after making the decision to terminate for medical reasons, please reach out to our Bereavement Care Manager at info@nationalshare.org or call 800-821-6819.

1 Comment

  1. Alison on September 29, 2019 at 8:30 am

    Sweet Charlie. Thank you for sharing your story. We had to say goodbye to our son William at 14 weeks gestation due to a full trisomy 18 diagnosis. He was our miracle baby having also dealt with infertility. It never gets easy. I miss him every day.

Leave a Comment