DiagnosesStoriesTurner Syndrome

Frozen in Heartache

People say you need to make the best decision for you, and that there’s not a wrong decision. But what do you do when there is not a right decision?

By Liane

I get it now. You never know true heartbreak until you know true heartbreak. I think back to the worst heartbreak I’ve ever been through and it seems like nothing compared to this. I won’t lie. I didn’t want to be pregnant, at first. It was too soon, too unexpected. I didn’t think we were ready, and I saw myself kissing all my fun trips and my selfish life goodbye. That, on top of feeling super sick for months, did not make this an easy pregnancy for me. I was miserable. I’m a worrier by nature and most of the pregnancy I didn’t want to tell people for fear that something was wrong. Meanwhile, the whole time I believed that we would be fine and there was no reason to believe the baby wouldn’t be healthy. We planned a life, told our people, bought gifts, and shared our excitement. I have never loved my boyfriend, Stephen, more.

After a fun weekend wedding I was finally starting to feel better after 12 weeks of morning sickness. Then the call came, pulling me into a downward spiral of sadness, anger, and depression. Late Sunday a doctor confirmed what I feared- the NIPT test came back and flagged a chromosomal abnormality. I don’t know if the doctor did a bad job presenting the information or I was too panicked to understand, but all I knew is that we would have have to speak to a genetics counselor in the morning. In our heads, we were already starting to cope with the hardest loss of our lives.

The next day when, after countless hours of research and one phone call, we discovered there was an 85% chance our result was a false positive. We made calls, scheduled a CVS test for the same day, and we were off to prove our baby was fine, this was just a scare. We were told everything on our ultrasound looked normal and healthy, and we left in high hopes, turning toward positivity, faith, and each other.

Then the next dip of the roller coaster came. The initial FISH test flagged Monosomy X again and confirmed we were not a false positive test. All I could say was what the actual heck. We are good people, we did everything right, and God had let us down. I hated myself for my early uncertainties with the pregnancy, how much I took for granted. We found ourselves back on the roller coaster ride, starting the mourning process of losing our baby once again.

Being in the thick of emotions, I had never felt more stuck or numb in my life. It is the worst, gut-wrenching heartbreak I could possibly imagine because after another long conversation with the genetic specialist, we found ourselves stuck between a rock and a hard place: Do we choose to terminate the pregnancy now, when it would be easier on us physically and emotionally? Or do we run more tests in the hopes that our baby still has a chance of being healthy? I felt and still sometimes feel like I failed the first test of motherhood by not automatically wanting to do further invasive testing. But I also felt strongly that I couldn’t bring an unhealthy child into this world just to suffer because I wanted this baby so badly.

I read countless stories of mothers learning their babies had Turner Syndrome, then experiencing heartbreak after losing a child 19 or 20 weeks after birth. The thought of having to go through that absolutely killed me. But could I live with not knowing if this child had a small fighting chance? Or were there too many things stacked against us? Were we just kicking the can down the road? The indecisiveness and grayness of the decision was paralyzing. The thought of moving my arms or making food or even going to bed seemed absolutely impossible. Let alone the thought of going to work or moving on with life. I have never felt so weak or defeated in my entire life. I loved this child, or the idea of this child, but deep down I knew something was wrong.

I was never one to think that women who miscarried did anything wrong or that it was that big a deal because, in my mind, it was unlikely to happen again. Now I know how naïve I was. I felt like I was letting everyone down, including myself, Stephen, and the baby inside me. Every scenario that played out in my head brought confusion, rather than peace. After countless hours of research and statistics it became clear that a positive outcome in the shape of a health child was likely out of reach. Stephen and I were trying so hard to find the answer we wanted so that we could control this horrific situation, and lead ourselves to the happy, healthy child we wanted. People say you need to make the best decision for you, and that there’s not a wrong decision. But what do you do when there is not a right decision?

We chose to protect our child from a potential lifetime of suffering. People say it is the most loving thing you can do but we are still working through the grieving process alone and as a couple. I believe it has made us stronger but the sadness hits in waves and I still sometimes feel like I failed. I had said throughout the whole pregnancy that I did not believe God would have put us in this unexpected position to tear a baby away from us but I am still angry at how wrong I was. All I can try and do now is hope that maybe my story someday helps someone else who feels they are frozen in heartache. I hope that this child has paved the way for us as parents, that we know more now than we knew the first time around. We thank this child for allowing us to love our potential future children more than we ever thought possible because we now know the true heartbreak of saying goodbye.

Photo by Wolfgang Hasselmann on Unsplash.