Blake, You Make Me Better

My name is Kayla, and my husband is Tim. I just gave birth to our son, Blake, on September 5, 2024. Our friend, who also has a child with Down syndrome, learned that Blake had been diagnosed. She had a Jack’s Basket sent to us, and it was just what I needed.

Here is Blake’s story:

When I discovered my pregnancy with Blake, I was glad, but the excitement wasn’t what it should have been. It was my third pregnancy in 9 months, after all. Instead, my reaction was, “Here we go again…” I was preparing for grief, not a baby, and that was my state of mind for the following few weeks.

Other than being blessed with very minimal nausea, this pregnancy was far from the experience I was hoping for. Of course, so many people asked repeatedly how I was feeling or how I was doing. Physically, I felt better than expected most of the time, and I usually responded based on that. How I was doing overall was something I couldn’t get into during this small talk, and most of the time I didn’t want to talk about it regardless. Before this pregnancy, I was jealous of women who were pregnant. Now that I was pregnant for more than just a few weeks, I was jealous of women who did not have high-risk pregnancies. Yes, we experienced joy, hope, and anticipation, but these emotions were often overwhelmed by grief, fear, and anxiety. As a result, I felt emotionally numb for much of the pregnancy.

I finally had my first ultrasound at 11 weeks. I was emotional as my husband (Tim) and I walked out of the ultrasound room, holding the first pictures of our baby. I was already further in this pregnancy than I had ever been, and I felt like I had hit a milestone already.

A few weeks later, I received a call from the doctor’s office after the genetic testing results came back. Our baby was at high risk of having Down syndrome. I was devastated. For days, my hope and excitement for the pregnancy crumbled to the point of questioning whether I even wanted the baby anymore, something that was never actually up for consideration, but enough to make me feel like a horrible human being. My morning drives to work had gone from having joyful, thankful tears to desperate, crying prayers. Why me? Why my baby? What made me equipped to be a mother to a child with special needs?

We ultimately decided that I should undergo an amniocentesis at 16 weeks to verify the diagnosis. The morning of the procedure, I covered myself with a prayer blanket my aunt’s church prayed over and anointed, and I thanked God for my baby boy’s health and victory. The procedure went well, with no complications.

A few days later, the diagnosis was confirmed, and I broke. Tim came home while I was sitting on the couch sobbing, but I thanked God for him that night as he listed many of the special things we would get to experience with our little boy.

In addition to finding a third chromosome 21 in Blake, they found that a copy of chromosome 21 is attached to a copy of chromosome 14, a chromosomal abnormality known as Robertsonian Translocation (RT). This made it more likely that his condition was not completely random and could have been inherited. After having both mine and Tim’s DNA tested, they found that I also have a translocation between chromosomes 21 and 14, making me a balanced RT carrier. Since my chromosomes are balanced, it has no obvious effect on me other than significantly increasing my chances of having miscarriages or babies with Down syndrome.

While knowing this information gives me closure on my previous miscarriages, I feel almost guilty for something I can’t control. I feel like I am to blame without it being my fault like I need to somehow apologize to Tim and our son for something I caused but didn’t do.

From that point forward, we went to several extra appointments with specialists to examine closely for specific health conditions. Thankfully, nothing major was found, and the doctors seemed optimistic that Blake could be delivered at full term.

These wins still didn’t put my mind at peace like I wanted. I did have days that I felt excited, but a lot of the time I either had anxiety about labor or was genuinely worried that I wouldn’t love our baby enough.

Our induction date was scheduled for 39 weeks; however, after our 38-week appointment, there were concerns about the umbilical cord not providing enough blood flow and low amniotic fluid. They wanted to induce immediately. We arrived at the hospital just a couple of hours after that call. Blake was born the next night after a mostly smooth delivery.

The following days were blurred with emotions. The love I wanted to feel immediately after his birth hadn’t hit me like the wave that I expected. This change to our lives still felt surreal, but every day that passed felt more like reality as we bonded with Blake. The day we arrived home from the hospital, I rocked him and cried with love over him. I’ve tried to soak up every moment I can without looking into the future. I’ve found myself wishing he would always stay this small with such soft hair and skin. With each day that goes by, we love him even more.

Kayla, Blake’s Mom