In August 2011 when I was 36 weeks pregnant with my second daughter, Chloe, my whole world fell apart. At a routine ultrasound, it was discovered that she had a serious heart defect that would require surgery. This was bad enough but upon further investigation, it turned out that this particular heart defect was common in babies with Down syndrome. This was a huge shock because I had come so far in what I thought was a normal, healthy pregnancy.
To confirm this diagnosis, I had an amniocentesis. Before the procedure, I was given another ultrasound, this time by an Obstetrician who again told me that there was nothing he could see to indicate that my baby had Down syndrome. I was relieved. Two days later however, the results of the amniocentesis came back and confirmed otherwise. Despite my low risk and all the ultrasounds being clear, my baby had Down syndrome.
I felt so many awful feelings at the time of Chloe’s diagnosis. The grief was indescribable and I found myself thinking, “What the hell?” If this had been discovered before 20 weeks, I would have been offered a termination but now that it was too late for that, I was instead handed information on Down syndrome and told that if I had to choose a disability for my child, this would be the one. That my baby would be beautiful and happy and loving and everything would be alright. This was so difficult to make sense of and my head was spinning!
My knowledge of Down syndrome was very limited and what I already knew scared me. I wanted to learn more so I searched the Internet every night and read everything I could find. I looked at photos, read stories and information about the potential health issues and physical characteristics that my baby may have. I was frightened for my family and especially for my 4 year old daughter, Emma. My heart broke when I thought about what this would mean for her. She was so excited to be having a baby sister but now I worried how this would impact her life. Everything was going to be so different. I expected the worst and it hurt. It hurt so bad. This was not what I wanted for myself, my husband and especially not for Emma.
Finally the day of Chloe’s birth arrived. This moment was one that I had been so afraid of. But the whole experience of seeing her for the first time was not scary at all. It was beautiful and unique and amazing. Through all my grief and sadness, I had somehow forgotten one very important thing – Chloe is a baby and she is mine! She looked straight at me with her eyes wide and I found myself smiling. She was beautiful. I said hello and covered her little pink face with kisses. I am your Mummy!
It is routine for expecting mums to undergo a screening test for Down syndrome and other less common chromosomal abnormalities during the first trimester of pregnancy. The problem with this screening test is that it does not provide a definitive answer for Down syndrome. It only provides a risk. I have learned that mothers can be given a risk of 1:14000 and still give birth to a baby with Down syndrome. Likewise, a mother can be given a risk of 1:3 and their baby will be born perfectly healthy. The only test that can provide a 100% accurate result is an amniocentesis. This invasive test, however, has a high risk of miscarriage so it is only offered if a mother’s risk of Down syndrome is higher than 1:300.
I do not blame the Sonographers or my Obstetrician for not picking up Chloe’s Down syndrome. They can only see what is on the screen and I understand now that not all babies with Down syndrome have these soft markers. I just wish this had been made clearer at the time of my screening.
As I write this, I can feel the anti-abortionists ready to pounce but in order to make my point, I will be honest and say that if I had have found out early in my pregnancy that Chloe had Down syndrome, it is highly likely that I would have terminated. This decision would have been made out of fear and ignorance. Throughout the screening process, very little information was provided about Down syndrome and the brief information that I received was rather negative. Down syndrome was portrayed as an unwanted condition. There was certainly no mention of it being beautiful and loving and wonderful. The majority of parents who find out early in pregnancy that their baby has Down syndrome sadly do terminate. Maybe there wouldn’t be so many terminations if people were better educated.
Chloe is 7 months old now and I am thankful that we weren’t given the option to terminate our pregnancy. If we had chosen to, terminating her would have been a real tragedy. Having a baby with Down syndrome is nothing like I thought it would be. Chloe is so beautiful and she surprises us every day. When she was 3 months old, Chloe survived open heart surgery and now that she has recovered, she is growing and achieving her milestones which is so amazing. When I look into her beautiful blue eyes, I know she is meant to be here with me.
It is early days yet and I still have so much to learn and discover. I am certainly still fearful of the future, but this fear has so far been much worse than the reality. There is nothing I can do to take away that extra chromosome from Chloe but what I can do is enjoy today and keep an open mind. There is a whole lot of help, opportunity and acceptance out there in the community for those with Down syndrome so already, Chloe’s future looks brighter than I could have ever hoped for.
On the 21st of March, it is World Down Syndrome Day. Seven months ago, at the height of my grief, I would never have imagined myself saying this but I am really looking forward to celebrating my precious Chloe and giving thanks to all the amazing things she has brought to our lives. She makes me want to be a better person and to live a better life and I am very grateful for that.
Suzanne Loveland is a mum of 2 beautiful daughters and she runs her own marketing business, Creative Elements from home. Suzanne is also an aspiring writer and has recently started a blog which you can read here.