Turner Syndrome Foundation
Sara is a woman who lost her second child in utero due to Turner Syndrome (TS). In this post, she shares her story of loss, acceptance, and perseverance in coping with miscarriage.
While miscarriages occurs in up to 99% of every pregnancy in which TS is present, each pregnancy is different. This is one woman’s very moving experience. If you are pregnant or trying to become pregnant, consult with your OB/GYN or a pediatric endocrinologist for more information.
The Words No Expectant Parent Wants to Hear
“There is nothing that can prepare you to hear those words as an expectant mother, especially not for the second time in five short months. “
Sara
“I’m so sorry; you’re measuring a week behind, and I’m not seeing the heartbeat.” There is nothing that can prepare you to hear those words as an expectant mother, especially not for the second time in five short months.
My first pregnancy had ended in miscarriage in December 2019. Our baby girl never had a heartbeat due to a chromosomal abnormality called Trisomy 2. But at our first appointment for my second pregnancy in April 2020, we finally got to hear our baby’s heartbeat. Seeing that little flicker on the ultrasound screen, I finally let out the breath I felt like I had been holding since December. We had officially cleared the hurdle that we hadn’t been able to the first time.
But two short weeks later, I went back for a follow-up ultrasound, and that little flicker was gone. We had lost our baby. Again. The guilt I felt was beyond words. I spent a lot of time being angry at my body. I spent countless hours wondering what was wrong with me. Why couldn’t my body do this properly, when it seemed to come so easily to so many other women? For somebody coping with multiple miscarriage, it was gut wrenching to consider.
Getting Some Answers
Weeks later, my wonderful doctor shared the results of the genetic testing we had done after I miscarried. Our baby, our second daughter in heaven, had TS, something I had never heard of (and began researching voraciously the minute I left the office). He explained that our girl was missing the second copy of her X chromosome, which very often results in miscarriage, but not always. He said babies who are born with TS often have lifelong developmental challenges and health issues, which he gently described.
Just like our first miscarriage, this was another “random error in cell division.” My miscarriages weren’t linked, there was nothing wrong with me or my husband, and there was nothing we could have done would have prevented this from happening. He kept reassuring me that this information was, in fact, good news. He meant for those words to make me feel better–and in a way, they did. But mostly, I felt helpless. How could I change the outcome if there was nothing to fix?
Coping with Miscarriage
“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”
Albus Dumbledore, Harry Potter
Throughout my journey with coping with miscarriage, my biggest struggle has been feeling like there’s nothing productive that I can do to change any of the challenges my husband and I are facing. I have spent so much time the last few months trying to bring some sort of purpose to this pain in honor of my daughters. When I saw that the Turner Syndrome Foundation (TSF) was hosting a read-a-thon fundraiser this month, it felt like a sign. This was how I could turn my grief into action.
I set up my fundraising page that day and began gathering donations from my wonderful family and friends. My sweet girl won’t have the chance to benefit from the research and advocacy these generous donations will fund, but someone else’s child will. Someone else’s child will live a long, beautiful, healthy life because of it, and in some small way, I will have helped that happen. It doesn’t erase my pain, but it means the world to me to know that another mama won’t have to go through what I did. I am so grateful to the TSF for offering me the opportunity to share my story, in the hopes that it will help even one person know that they are not alone in the darkness of their grief.
As a huge Harry Potter fan, I can only think of Albus Dumbledore’s words right now: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” Thank you, TSF, for helping me turn on the light while coping with miscarriage.
If you have experienced loss of a pregnancy, TSF is here for you. If you are a parent expecting a child with TS, access the information you need to know.
Thank you for sharing this. My husband and I just found out our baby isn’t viable due to TS. We’re devastated. He is a radiologist and went with me to get an ultrasound after my NIPT came back abnormal. I knew as soon as he saw the image on the screen and his facial expression changed that something was wrong. Nothing prepares you for the words “not viable.” Reading your article has put this into perspective. Some babies are born to be with us and we watch them grow up. Some children come into our lives as angels. My baby girl is an angel now.