Gwendolyn

In 2018 I was 38 years old, and I didn’t know if I would ever be a mom. Up to that moment in my life I had never been pregnant; I had never had a miscarriage or even a pregnancy scare. I had no clue if I was even capable of becoming pregnant. My husband and I were newly married and because I was close to 40 and we didn’t know how long it would take to get pregnant, we went straight to fertility treatments. But then, just two rounds of IVF later, I was pregnant! We were thrilled, walking on air, and completely and totally in shock.

At each ultrasound the baby was growing wonderfully, and things were going great. I didn’t have any morning sickness and really felt like my experience so far was close to being the most perfect pregnancy imaginable. But despite being so happy, we were worried about the possibility of miscarriage and were fearful that something would go wrong. And then something did.

At my 11-week ultrasound, the doctor ordered a blood test to check the gender and ensure everything was genetically normal. For women over the age of 35, this test was routinely recommended. I was elated! I had the opportunity to find out the gender almost 10 weeks earlier than normal, since that is typically not done until closer to the 20-week mark. The genetic part seemed like an afterthought and I wasn’t worried in the least about it. My doctor said the results would be emailed to me, and a week later as I was checking my inbox for the results, my phone rang. I was at work and completely surprised to see my doctor calling because I hadn’t expected a phone call from her. I immediately felt a sense of dread. When I answered the phone my doctor quickly asked if I had seen the results via email yet, and I told her that I had not. Without further pause she said, “Your baby has Trisomy 21”.

The amount of shock I felt at that moment could not be believed. I left my office and ran crying to my car. I drove home right away and met my husband there as we called our doctor back for more information and to find out the other piece of information learned from the testing – the gender. The doctor said that the blood test was 97% positive for Down syndrome and that she wanted us to meet with a genetic counselor the next day for further testing. Then, after asking if we wanted to know the gender she said, “It’s a baby girl”. As my husband would say later, this was one of the most poignant moments because when she said it, our doctor’s voice trembled with emotion and you could tell she was crying. We started crying too and for a brief moment felt so happy at the news!

We later talked about that moment and tried to understand why the way she delivered the news about the gender was so impactful. We realized it was because it really humanized the baby that was in my stomach. That baby may have had a strange and foreign diagnosis, one we hadn’t even begun to comprehend, but that baby was also an actual BABY. A girl!

The next day was rough because we went to the Maternal Fetal Unit at our doctor’s office for additional testing. They first did an ultrasound and measured the skin on the back of the baby’s neck. The skin should measure under 3 cm for babies without Down syndrome, and 3 to 6 cm approximately for babies with it. Ours measured a little over 3 cm. Based on that measurement and the results of the blood test, the doctor said he felt sure she did have Down syndrome but that if we wanted a 100% diagnosis we should do a CVS test (chorionic villi sampling). We decided to do it right then and there, so we could have peace of mind and just move forward. They put a long needle in my belly and gathered placenta cells and sent them off for testing. We received the results back in about 7 days and had the 100% diagnosis we were expecting.

We did the chorionic villi sampling simply because we needed to be certain of the outcome. We could not live through the remaining months of the pregnancy wondering who our daughter was going to be. The minute you get pregnant you spend a lot of time imagining your child’s identity. We needed to take time during the rest of our pregnancy to meet her again and have the opportunity to fall back in love with this new baby, so having that diagnosis was very important to us.

We were in so much shock at first that we really didn’t know what to do or how to process the news. We knew we couldn’t consider terminating the pregnancy, but in those initial days we didn’t know how we could have her either. We were in a deep depression, slept a lot and were truly grieving. There had been a death; the death of the child we thought we would have. An outcome like this, after so badly wanting to have a child, was unthinkable.

We slowly started reaching out to friends and family and to our local Down syndrome foundation. Slowly, little by little, we started to heal. We met with a wonderful family who had a young son with Down syndrome, and we were completely charmed by him. We heard stories from dozens of friends and family members about how they were touched by someone they knew with Down syndrome. We also heard stories from parents about various issues their kids have all faced, and how there are no guarantees with ANY child that they won’t have struggles and differences.

One day, a few weeks after the diagnosis, I was holding my belly and trying to decide if I could ever reconnect with this baby girl when I imagined her looking up at me. I imagined her shaking her little fist and saying “Forget you momma! If you won’t love me then I won’t love you! So there!” The thought struck me in a humorous way and suddenly I was laughing AND crying. I realized this was just our baby girl. She had some slight differences, but she was still ours nonetheless. I knew in that moment I DID love her, and I WOULD love her.

The rest of the pregnancy was truly beautiful. I still had moments of sadness while adjusting to our new normal, as did my husband, but we were committed to keeping her and loving her and more importantly, to finding out as much about Down syndrome as we could. We realized that ignorance is what had caused us to have such a negative reaction to the news initially. We set out to understand Down syndrome and remove the mystery surrounding it so we could truly be at peace with it. I can honestly say that by the time our baby was born, we were delighted with Down syndrome and happy and ready to love our little girl. We no longer cared what others thought of her. Gwendolyn was born on December 18th, 2018, and when they placed her in my arms, the amount of love we felt surmounted that of any “typical” child we could have had. Because of Down syndrome, our daughter was unique and incredibly special to us.

Shortly after she was born my sister-in-law took some photos of her, one of which I decided to use as her birth announcement. I wrote a sweet little story to go along with it, comparing my daughter to a product I had ordered and treating it like a “review”. I referred to my daughter as an “upgrade” – one we didn’t ask for or need, but one we are so glad we got. I posted the photo and caption of my then 2-month old daughter, Gwendolyn, to Facebook. Amazingly, that birth announcement struck a chord and within a couple of weeks it had gone viral. It ended up having over 380,000 reactions and being shared over 80,000 times. We were already in love with our baby girl, but to know that so much of the world was too felt incredible. We received kind messages and an outpouring of support from literally all over the world. We cherished every single message and spent weeks trying to reply to as many as we could. If we had one sliver of doubt left about Down syndrome or if our baby would be loved, then it was completely erased due to that reaction from her birth announcement.

It turns out the birth announcement was a balm to the emotional pain that many other new parents had been feeling about the different chromosomes their own children had. In showing the world that we loved our child regardless of her chromosomal count, the world showed us back that they loved her and all kids with an extra chromosome too.

After learning our daughter’s diagnosis I made the observation that my husband and I now felt like The Grinch; because we felt like our hearts had grown THREE SIZES since receiving her diagnosis. We will forever be grateful for the opportunity to have our Sweet Gwendolyn. If you are ever offered a similar upgrade,