During the summer of 2015 we decided we were going to casually try to conceive our first baby, secretly hoping it would happen quickly. And it did! On September 4th, 2015 we found out wewere pregnant. This was the moment I envisioned since I was a little girl and it could not have been more perfect. It was not an accident and it was not a mistake. It was everything we wanted and we could not have been happier!
At our first doctors appointment we were offered to do the Integrated Prenatal Screening (IPS) for genetic disorders. No one in our family has a known genetic disorder, but we thought “sure”, why not? We didn’t look into the possible outcomes as we had only heard of one genetic disorder – Trisomy 21, more commonly known as Downs Syndrome.
On Monday November 30th, at approximately 17 weeks gestation, we received a call from our doctor letting us know that we tested high with a 1:35 (or 2.9%) chance of our baby having Trisomy 18, or Edwards Syndrome. We went on to find out that Trisomy 18 is a rare and oftenfatal genetic disorder. We decided to keep this information between the two of us and tell our family and friends when we had a definite answer. We felt alone, but we didn’t want others to influence our fears or talk us out of the decision we might have to make.
At this stage in the testing we were very optimistic. We didn’t have a reason not to be. Our baby still had a strong heartbeat and I was even starting to feel her movements. With a 2.9% chance, the odds were in our favour.
After receiving the IPS results, we were sent for a detailed anatomy scan and the Non-Invasive Prenatal Test (NIPT). On Monday December 21st, our doctor asked us to come into her office as soon as possible. My heart sank. At that moment, I knew the results weren’t good. As we were walking back to her office, I broke down in tears. I didn’t want to go in and I didn’t want to hear what she was going to say. The NIPT came back with a 99% chance that our baby had Trisomy 18 and the anatomy scan showed definite markers of the disorder. Everything after that was a blur. I remember burying my face into my husband’s chest while holding my belly, feeling nothing but guilt and anger.
From there we went on to schedule an amniocentesis and further testing. We went to Calgary that night to meet with genetic counsellors and doctors the next morning. We had two more ultrasounds, talked with a few different doctors and had the amniocentesis. We got the rapid results two days later, on Christmas Eve 2015. We received confirmation that our baby had Trisomy 18. The final ultrasounds showed that our baby’s brain was filling more and more with fluid and her sweet little heart wasn’t growing in the right position. We received the fateful news that doctors were not expecting her to live much longer and asked us how we wanted to proceed. At this point we knew we would deliver our baby girl and made the decision to have a late term abortion.
On the morning of December 27th we went into the Calgary South Health Campus Hospital to be induced. We were 21 weeks and 5 days pregnant. After settling into our room we had the nurse and doctor come in to explain the induction process. I was so scared. We were very fortunate to have an amazing nursing team who walked us through the labour and delivery process and told us what to expect when she was born.
The following day after a few more doses of theinduction medication, I finally started feeling the painful cramping. Or I guess contractions? I didn’t know the difference and I had no idea what to expect. As the contractions got worse and worse, I asked my nurse for the epidural. Five minutes later she came back and said the anaesthesiologist got called into an emergency C-section and wouldn’t be able to do the epidural for over an hour. I was so tired, in so much pain and I was so sad. Both mentally and physically, I was done. Ironically, just after the nurse told me I couldn’t get the epidural, she checked my cervix and I was fully dilated.
This was it. A decision that we never thought we would have to make. It was not a wanted abortion; it was not a “way out”. It was not the conclusion to a one-night stand or a night we neglected to use protection. We were in the midst of the worst day of our lives, but a moment that we would cherish forever.
Within minutes I started pushing. My water broke first, two pushes later it was over. After being in labour for over 12 hours and in the worst physical and emotional pain I have ever experienced, our baby was born. We got to hold her and tell her how much we loved her as she took her last breath.
We did everything we could to make this moment as memorable as possible. The nurses brought in a “cuddle cot” (cold bassinet to preserve the body) so we could spend the entire night with her. We even got a photographer from the volunteer company Now I Lay Me Down To Sleep to come and take photos for us. These photos are all we have to remember our baby and the photographer did an incredible job capturing her beauty. This tiny little girl made such an impact on our lives and will forever be in our hearts.
I truly believe that everything happens for a reason. Testing indicated that a genetic fluke was the result of our first baby having Trisomy 18. As I sit here writing and reminiscing about our tiny angel, I am also cuddling our second baby, a precious and perfectly healthy 5-month-old little girl. This little human is absolutely EVERYTHING to us, and she wouldn’t be here if it weren’t for our first pregnancy journey.
From day one we said that it was the easiest choice we’ve ever had to make, but the hardest thing we ever had to do. We wanted to meet and comfort our daughter. As a woman, one should never have to justify a decision you’ve made for your life, your baby and your body. I share our journey in hopes that it inspires other women to talk about their story and to stand up for women’s rights. We made a decision for our baby as much as we made a decision for ourselves.