I was 16 weeks when we received warning bells for a genetic disorder. It was an early anatomy scan but late for genetic testing as they were very booked and didn’t have a ton of appointments.
The first part was fine. They told me the baby was a girl and I was ecstatic. I have a four-year-old little boy so I was getting everything I wanted- one of each. The rest of the appointment was going OK until the ultrasound tech gave me a tight squeeze of my hand before leaving the room. Something felt off about this gesture. It wasn’t a congratulatory squeeze, it was the type you give someone when you feel bad.
The doctor walked in along with another lady who turned out to be a genetic counsellor. They were calm, telling me “Your daughter has a red flag for a genetic disorder. It’s likely she has Down Syndrome. would you like to talk about termination?” I was taken aback. I mean just 5 minutes ago you said everything looked good and I had a healthy little girl. Now you’re asking me if I want to talk about termination? My world stopped and I felt like throwing up, but I said no. I wanted more testing. I wanted the NIPT tests, and whatever else was available. I didn’t want to believe it; I just couldn’t.
When I got my blood work back from the NIPT there was a 70% chance of Down Syndrome. It still wasn’t enough for me, so I elected to have an Amniocentesis. I had it about two weeks later and it was awful. It took three tries before they could get enough fluid that wasn’t compromised. We had to wait another week for the results to be confirmed. When the results were in there was a 99% chance of Down Syndrome and the type was translocational, meaning it could have been passed down from my husband or me which added another layer to everything.
It was a hard decision to make, to terminate. My husband and I didn’t want to, but given our living four-year-old is already severely autistic we didn’t know what that would mean for his life or for her life. It would be a constant battle between him and her. Not to mention we had no idea what it would mean for her quality of life, but ours as well. We are already spread so thin with our son, it didn’t seem fair to anyone to bring her into our already chaotic world. There were more anomalies at the amnio that I didn’t want specifics on, but they were life-altering, not threatening, but I still see it as another obstacle for her to overcome on top of a genetic disorder. It didn’t seem fair when I already have to watch my son struggle so much.
We scheduled the termination and it was pushed back twice by a horrible clinic. When I finally did get in, I was so scared for my life that I left. I then called DuPont and scheduled with them and had an appointment two weeks later. By the time of the appointment with DuPont I was just shy of 25 weeks. I was so scared and had so much guilt over choosing to end my daughter's life. I wasn’t happy, but I was content with the thought that I was doing the right thing. The people there were truly incredible and I wouldn’t have been able to get through what I did without them. They deserve so much recognition because they never made me feel bad for anything. They constantly asked if I needed anything, reassured me I was in control, and treated me and my baby with the most sincere respect and dignity. They’re beautiful people inside and out and I have no regrets going and having my daughter there.
I won’t go into too many details about the three day procedure but on day one we found out about more anomalies with our daughter than we had anticipated. It complicated things physically for me that first day, but emotionally after her heart was stopped, I realised how right the choice was. Even after she had been delivered, the physical anomalies were pretty extensive; we weren’t shown her face due to these. It broke my heart, but my fears were answered and I knew again this was the right decision.
Just because I believe this was the right decision, doesn’t mean I don’t mourn the little girl I’ve lost. She was and will always be my first daughter. All I have left of her are a few pictures of her hands and feet, her small pink hat, and her ashes. Every day I wake up and register the empty feeling in my stomach where I used to feel her, and I sob because it’s unfair. I didn’t deserve this to happen to me, and she didn’t deserve to have these things wrong with her. She deserved a good and easy life and I deserved to raise her. I’ll love her until the day my own heart stops.
I never thought I’d be in this position. I’m very pro-choice for any circumstance, but to find yourself in the position of having to choose this for your child is the biggest heartache I’ve faced to this day. I’m firm on my choice and I always will be, but I feel guilt over it every day. I don’t think I will ever be 100% okay.
One thing that’s been getting me through this, is that it’s still a loss. My little girl still passed and it’s still baby loss whether or not I had to make that decision for her. This will be the thing I wrestle with until I die. It’s not something I would wish on anyone. It’s single-handedly the worst club I’ve ever joined, but it’s also been one of the most supportive I’ve experienced. My heart breaks for myself, my husband, my son, and everyone else who has experienced this.
I love my daughter. I miss my daughter. I can’t describe the agony I’ve felt since she was here and since I had to leave her. The ache grows and I know I’ll never be myself again, but taking on this burden so my daughter never had to experience it is a burden I’d carry a thousand times over.
Written by a TFMR mama