pregnancy

I chose to terminate my down syndrome pregnancy. And I wouldn't wish it upon anyone. 

When the anaesthetic was injected into my veins, I lay there in the hospital, with one hand resting on my stomach, hoping to send some kind of message to our baby girl that I was there with her. I wanted to tell her I was so very sorry for what we had decided to do. I groggily woke up in the recovery ward a few hours later, and I placed my hand back on my stomach again. She was gone.

Our little baby, who we nicknamed ‘Dot’, given her tiny size when we first found out I was pregnant, had Trisomy 21, more commonly known as Down Syndrome. We found out when I was at 15 weeks. We had safely gotten through the first trimester, and had broken the exciting news that we were expecting, to our families and friends.

When my partner and I first found out, it felt like the most unfair news you could possible receive. We were both fit and healthy (aside from a bit of a sweet tooth on my partner’s behalf). We had tried to be good, and ethical people. We both pretty much gave up on eating meat a few years ago, because that didn’t quite feel right. I work in designing programs that create positive social impact. My partner had always tried to choose jobs where he could also give back, and gives money to multiple charities every year. We have the most incredibly strong relationship, the kind of love that I never actually knew was possible. We were so excited to work on being great parents. And this happened to us?

"We were so excited to work on being great parents. And this happened to us?" Image via iStock.
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Once a series of medical tests had confirmed the presence of Down Syndrome, we made the excruciating decision to terminate the pregnancy. That was our personal decision, and a situation I wouldn’t wish on anyone. I have so much respect for parents who opt to continue their pregnancy after finding out about their baby’s condition. That is the most incredibly courageous decision for them to make.

I’ve deliberated over writing this for two months. A huge part of me doesn’t want people to know what really happened. We’ve told a few people I was just on sick leave from work. We told some others that we had ‘lost’ the baby. But as the weeks passed by, my sense that I needed to tell the truth about what happened, continued to build. When we were in the process of making our heart wrenching choice, I read a few stories written by parents who made the same decision, and they really helped me. I remember thinking how brave those parents were to talk about their experiences, especially given how little society talks about this. I also initially thought there was no way I could share our story.

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Let’s be honest here. The reason people like me don’t talk about these things is because they’re wrapped in layers of shame and guilt. Perversely, because we don’t talk about them, the shame and stigma grows. Brene Brown talks beautifully about shame, and how we need to name it and face it. So, here I am, in the hope that this might help another parent somewhere, someday, in the way those stories helped me.

We were very fortunate to be surrounded by mountains of love and support from our family and friends. Even though we retracted into our little shells for a while, those closest to us continued to check on us, and pile us with beautiful love.

"The reason people like me don’t talk about these things is because they’re wrapped in layers of shame and guilt." Image via iStock.
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Of course, there are undoubtedly those who don’t agree with, or understand our decision. I suspect they think we took the easy way out. That we were too selfish to see this pregnancy through. Perhaps we were being selfish in a way. I’ll live with that incredible guilt every single day of my life. However, I refuse to accept that this was an easy way out. The pain that we endured is immeasurable, in the true sense of the word. You can’t quantify it, you can’t rate it on a scale of 1 to 10. There is no way of understanding it. There are moments of complete numbness. Others of disbelief. Then there is the pain of longing. Of longing for what could have been...a healthy, happy, even screaming, baby. Of not knowing whether we’ll be fortunate enough to have another baby. Or if we do, whether it will happen again, or there will be a different issue.

We ended little Dot’s life because we didn’t want her to endure a lifetime of pain. We knew that she would need constant medical attention, and we felt we couldn’t stand by and watch her as she struggled physically and intellectually throughout her (possibly short) life, when we couldn’t do anything to help her. The helplessness would have been agonising. So, we decided that we would take the excruciating pain of going through the termination, and living with that pain every day, so that our baby wouldn’t have to.

We’re not alone in the decision we made. In Australia, we don’t have access to statistics on parents choices in these situations, but in Europe, we know that around 92% of parents who are told their baby has a chromosomal condition, will terminate their pregnancy.  When we first found out about Dot, we felt like we were the only people in the world this could happen to. But, as anyone else who has been in this situation will know, when it happens, you sort of become a member of this really sad, yet supportive, club. More and more people share stories with you about their experiences. (I hope that club is closed now by the way, we don’t want any more members…) Support groups have also cropped up online, where you’ll see hundreds of acronyms and pregnancy terms like TFMR (termination for medical reasons) or ‘rainbow baby’ (a healthy baby conceived after loss). There is a also a book and website compiling sad stories like our own, A Heartbreaking Choice. These are such important contributions to the conversation, which until recently, has been fairly mute. However, as a society we’re still really uncomfortable about talking about this. We’ve started to talk about miscarriage, and even abortion. But not this. Brave celebrities are speaking out about miscarriages, but you’ll notice a complete absence of celebrities or public figures speaking about having to terminate for medical reasons. Statistically, it’s completely impossible that this doesn’t happen to public figures.

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To anyone else who is in this situation, and even those who aren’t, I would say that the ironic gift of the experience is that you become even more appreciative of the amazing gift of human life, and grateful for what we do have. My partner is undoubtedly the love of my life, and I still have him here with me. I’m so thankful for that every single day. In fact, we will be married in a couple of months, at a ceremony near where we released Dot’s ashes. Not that we need to be near her physically. She’s with us every single day.

To learn more about children with Down syndrome, you can click here. 

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