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?
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.
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.
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.
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.
Top Comments
For those who think that we took the easy way out….
To my beautiful baby.
It was a joy when we find out we were having our first child together, my second and your dads first. You were a boy just like we wanted. Another by to play with your older brother and share a room. You guys would have so much fun….I could already imagined…. Playing pirates, playing camping tents in the room until late nigh….arguing to see who would take shower last…. Our family was finally complete, you were finally here.
I had so much little clothes and little shoes…. I loved to smell then and imagined which smell you would have, I was certainly sure it would be the smell of clean lean mixture with cotton candy. I was so happy…. You made me happy, you made me stronger…I work harder at my projects; I tried to live each day at the time to enjoy each minute of that expected pregnancy……
We had a 3 D ultrasound, I could see you moving and attached to my body as almost hugging me from inside, I felt so loved, you loved me, I loved you, and that’s all it mattered at that time.
In one routine exam I heard for the first time the news…. trisomy 21…..I heard you had that, plus other complications in other organs. My questions was how this could happen since we planned you so much and took all vitamins…never abused any drugs, never did nothing bad to anybody…..matter fact I worked in a Charity Institution for many years…why us?
Days passed and another more invasive test confirmed that you were doomed to live in a world full of prejudice, lack of decent care, lack of compassion, and constant doctors’ visits….you had blood in parts that you was not supposed to have…. It was scary and I could not do anything. I blamed myself so much for taking some medications in the months before I got pregnant…..even though the doctors informed me that there was no link between those meds and Down syndrome….. but I did, I blame myself, I blamed your dad, I blamed the doctors, I changed doctors, I research about what could be done possibly….I did not get anywhere…nothing could be done…it was a disorder in your genetic makeup…. First time ever in our family. I was under 30 at that time.
I drove everyday sobbing in my car, sometimes had to park my car to the side of the road to cry…. Then get back on the road and minutes later park the car again to cry some more….
The doctors presented the options of medically terminate the pregnancy…It sounded so horrible, I was always against abortion, I was pro-life….now I was wondering what kind of life would you have? At what cost? Psychotherapy, Occupational therapy, Speech therapy, Heart Doctor, special education, never able to drive, get married, or have children….. And if something happened to me you would have nobody else….that’s right, because I have no family….I am alone in this world as my parents had their rights terminated and my siblings are strangers to me… if something happened to me and dad…. dad has no family neither.....You would be in strangers hands, living as a SSI- Medicaid recipient, in the mercy of people that work to make ends meet not always for passion (few exceptions)….I know better how Nursing Homes works…. I am a Psychotherapist after all….I am in the medical field.
Your brother had his father, and his father and I had a bad divorce … I doubt he would raise you, I had my doubts he would raise his own son if something happened to me…
Your brother has ADHD, which means that cognitively he needs lots of help, he is a hand full at school and not many people like to babysit him neither…I always had trouble to find someone to keep him so I could go to grad school… that being said I could not expect him to care for you neither…as I thought he would need help himself….
But I wanted you so much, I just want to hug you and protect you and fight with anybody that disrespect you and discriminated you…. I wish I could shelter you from all the pain and suffering your little life would encounter…. I decided to be strong and decided for me and you….and decided to take all the blame of the world for the “crime”, and risk going to hell if I had too…. And living the rest of my days missing you…. And carrying that blood in my hands and in my heart….so you did not have to suffer in this lifetime… I terminated the pregnancy …. That day had no before or after… it was just a sad, dark, lonely day…..
At the hospital they said they removed you by a D&C but I know there was the pill they gave me before that actually made your heart stop…. I felt…. You moved, kicked, your kicks got weaker and weaker….until they stop and sadly I knew you were gone…. I felt craziness, despair, sadness, anger, numbness, but never regret….. as a mom I decided what was best for you, even though it was not what was best for me…. It would be pure and simple selfishness to have you in this world with us just for our own gratification…. I knew you could not thrive without someone caring for you all your life… I could not make you pay the price of coming to this world to be a gratification to us….and later on struggle and suffered with your limitations…. With no extended family, after I was gone you would ended up in some institution….…… I would never ever be able to leave you with anybody else but me….
I am sorry for your short passage here…. I wish things would have been different….I love you a lot, and I know that you went back to be an angel up in the sky.
The only thing I can ask when I look at the sky’s is please forgive me….for not being enough because I am mortal and could not imagine living this earth one day and living you behind alone….. I only ask one thing of you if is not too much to ask….Would you know my name….If I saw you in heaven?
Would it be the same….If I saw you in heaven?
I must be strong and carry on….'Cause I know I don't belong here in heaven…
That’s our song…everytime I hear it I think of you….It has been long hard 6 years since you gave me the joy of being your mom. I had a daughter after you…and I am expecting again….but you are always, always in my mind and heart…no other child will ever replace what you meant in my life.
Some people dont want to spend the rest of their lives being a carer to a child of compromised intelligence and ablility who will burden them until they die - i understand that there will be some good times along with the bad, but to pretend that it would be a preferable life is a joke. Of course people have a right to decide if they want to terminate, the 'baby' is literally some cells and certainly not aware of anything going on, a termination allows the couple to try again and hopefully concieve a normal baby, why the hell wouldn't you