I wrote the following blog post on May 19, 2019 at 6 months pregnant, shortly after learning our baby was diagnosed with TGA. (Transposition of the Great Arteries, a congenital heart defect). What a difference a year makes…
Overall, I’ve been fortunate enough to have a smooth and healthy pregnancy. Aside from nausea and extreme exhaustion in the first trimester (par for the course) the only thing I struggled with was anxiety. I’ve been vocal about this in my pregnancy updates and received so many comments from women who experienced a similar overwhelming level of nerves, especially in the beginning of their pregnancies.
All I wanted to do was take care of my baby, but I had no real way of knowing if he was ok. In a strange way the nausea comforted me because at the very least it was a pregnancy symptom. Right around the time it subsided, I started feeling him move. We’d had several ultrasounds at that point and everything looked perfect, so I finally started to feel confidant enough to relax and enjoy my pregnancy.
Going into our 20 week anatomy scan I wasn’t nervous for the first time ever. I was just looking forward to seeing him and hoped we could get a clear picture of his sweet face. Little did I know, my pregnancy was about to take a sharp left turn and my anxiety would go from subdued to crippling in the weeks that followed.
My weeks switch over every Saturday and my anatomy scan fell on a Friday, so I was one day shy of 21 weeks when I walked into our appointment. Our OB had an ultrasound machine and technician in office, so typically we saw her first and then checked in with him afterward. The tech seemed busy, rushed, and quite frankly a little grumpy when we walked in, but we didn’t let it faze us. (Yes, this was the same tech who announced we were having a baby girl. I’ll link that blog post here in case you missed that saga!) We were too excited to be bothered by her mood.
As soon as she put the wand on my stomach she expressed great dissatisfaction with the baby’s position. She tried shoving the probe into my stomach and wiggling it around to get him to move, but to no avail. He was curled in a ball with his arms covering his face. His spine was facing up, so it was pretty much the only thing we could see. She said she couldn’t get any of the images she needed and that she would have the doctor reschedule us. We were disappointed but she assured us it wasn’t cause for concern, she just couldn’t afford to wait for him to move.
The rest of the appointment went great, and the doctor gave us a referral to see a perinatologist who would not only have the time to get all the images we needed, but had a more advanced machine so the images would be even more detailed. Sounded great!
The following Wednesday evening, the perinatologist was able to get us in at 7pm. We thought the time was a little odd, but at least it meant we wouldn’t be fighting LA traffic to get there. His office called that afternoon saying he was running behind and we could either reschedule or push our appointment to 8pm. We’d waited long enough so we decided to just keep the appointment for that evening. We arrived at 8 o’clock and waited for another 45 minutes before being escorted into an exam room.
The whole vibe of the office was strange. The AC in the building was shut off so it was HOT, and apart from the janitor vacuuming the hall, the building was completely deserted. Once we finally started the ultrasound, we quickly noticed that the baby was in the same exact position. That worried me, but the doctor assured us he’d be able to get everything he needed.
We asked a thousand questions, being nervous first time parents, and chatted away while he scanned for over an hour. Finally the doctor got very quiet and excused himself to “answer a page”. When he came back and started scanning again, I knew something was wrong. I could see it all over his face. Earlier in the appointment we asked him if he would tell us right away if he saw something concerning and he said it, “depends how bad it is”. When he fell silent with that anxious expression, my heart dropped.
He finally said, “Ok, so I did find something. Why don’t you grab your things and meet me in my office.” Jordan and I looked at each other and froze as sheer panic washed over us.
When we sat down at the doctor’s desk he had a textbook open in front of him. He seemed nervous and fumbled over his words as he said something about our baby’s heart. He began telling us about a condition called Transposition of the Great Arteries (TGA) and explained that it was very serious. I sat completely silent. Jordan asked if there was a cure. The doctor said yes but the baby would need open heart surgery shortly after birth to survive. At some point tears started streaming down my face, but I still didn’t speak. Couldn’t speak.
The doctor went into detail about our options for terminating the pregnancy and said given how far along I was, we really needed to make a decision soon. He suggested we do an amniocentesis to rule out any other issues, but I lost the ability to comprehend anything he said after the word “terminate”. I was devastated, terrified and so confused. We asked him if he’d seen any other cases of TGA, and he said only once and he “freaked out” when he first discovered it. He didn’t know what had happened to that baby because the mom moved out of state and didn’t remain in his care. Which obviously, didn’t comfort us in the slightest.
We called our moms in the car on the way home, but it was after 11pm by that point so my mom didn’t answer. We drove straight to my in-laws’ house and collapsed on their couch while we tried our best to explain everything we just learned. I quickly Googled TGA on the car ride there and saw a bit about the surgery, babies being born blue due to lack of oxygen, and how incredibly rare the condition was. I was sick to my stomach and neither of us slept that night.
I had a photoshoot at work the next day and I didn’t know what to do, so I just got up and went to work at 7am like normal. Although I quickly realized that was a terrible decision after ducking into a conference room and bursting into tears not once, but twice before 8am. I couldn’t concentrate and my entire body felt depleated. Around 9am Jordan texted me to say we had an appointment with a pediatric cardiologist at 11am if I could leave work. After an extremely supportive conversation with my boss and my work wife, Tierney, I bolted. We drove straight there, desperate for answers.
After two thorough echocardiograms (ultrasounds of the baby’s heart) over the next few hours, the cardiologist confirmed the diagnosis. Our baby had TGA and would need surgery almost immediately after birth to survive.
A huge part of me was praying the other doctor was wrong and didn’t know what he was talking about. Our baby was fine. His heart was fine. This would all be some sick joke we could forget ever happened.
I’ve had a few weeks to process all of this, and I’ve gone through almost every emotion since I first heard the words “TGA”. Denial, anger, fear, depression, determined to find answers and meaning, and now acceptance. At 6 months pregnant it’s taking everything I have to stay positive, but I refuse to let this pregnancy be plagued with fear and doubt. As his mom it’s my job to protect this little guy and to instill confidence and love in him. I always envisioned any child of mine and Jordan’s would be strong (and likely a bit stubborn, ha!) I just never expected to count on it so soon. This little guy already has a rocky road ahead and I’m going to do everything in my power to take that burden from him. Starting with giving him a peaceful and calm home for the next several months.
I try to stay active and get outdoors regularly; I nourish both of us with proper nutrition and rest when my body tells me to. He gives me countless kicks each day and recently started responding to our voices, which is the most incredible feeling imaginable. He’s my little companion, and I can’t wait to welcome him earth side into our family. I already know he will make the most perfect addition. 💕
Jumping in from the present (Leyton is now 10 months old!) to reflect on that conversation with Leyton’s cardiologist. It marked the beginning of a meaningful relationship, and really the start of our TGA/CHD journey. We later found a perinatologist who we trust and supported us through the final months of my pregnancy. From there we continued to build an incredible team of doctors and nurses we lovingly referred to as our Avengers, ready to swoop in and save our little man when the time came. Did they ever! To be continued. 🙂
