Every year, we schedule Scarlett for her annual cardiology appointment with her pediatric cardiologist. As soon as one of these appointments begins to approach, I become nervous, sad & anxious. My strong, beautiful little girl with her unique, special heart. I think about it every day and how lucky we are to have her. Everything happens for a reason, right? She was given her heart for a reason & we were given her.
Who knew our little heart beach rocks had a meaning from the beginning.
We have known about her condition since my 20-week ultrasound (May 2015) that Scarlett has a congenital heart defect (CHD). We were ecstatic to find out the gender, to see our baby’s growth & to make sure everything was developing properly at the half-way point. The ultrasound technician was showing us our beautiful baby girl, snapping photos & checking her head to toe.
To excited to notice, the technician was taking more pictures than usual of the heart. She didn’t say a word. She couldn’t. We were asked to wait in the lobby for the Doctor for follow-up.
At that time, the doctor said they sent photos to the lab & had noticed a heart defect. With no questions asked, they scheduled us an appointment the next day with the pediatric cardiologist at Legacy Emanuel in Portland. After the shock, disbelief & asking the question why, she explained what they had found. The appointment we had the following morning also confirmed what the OBGYN explained.
Scarlett was diagnosed with Transposition of the Great Arteries (TGA). This condition is when the two main arteries that run blood from the heart to the lungs & the other from the heart to the body & back, are reversed. This condition must be surgical treated within days of a baby’s life as they are unable to do live without intervention.
With this news, as well as the news of finding out we were having a girl, we had a roller coaster of emotions & challenges ahead of us.
Two months later at my 30-week ultrasound appointment (August 2015), the examination seemed to be taking a bit long. That was never a good thing. To our surprise & disbelief, the cardiologist had different news then planned before. We were expecting to hear more developments of her TGA. His explanation was plain and simple. Your daughter’s heart still had a transposition, but in utero, it had corrected itself.
Scarlett was re-diagnosed with a condition known as Congenially Corrected Transposition of the Great Arteries (CCTGA). In CCTGA, the two ventricles and their attached valves are reversed. “Your weaker, larger right ventricle grows on your heart’s left side. It pumps your blood to your body. Your stronger, smaller left ventricle grows on your heart’s right side. It pumps blood to the lungs. You also have your body’s weakest valve—the tricuspid valve—serving as your mitral valve.” *1
With this news, the need for immediate surgery was greatly reduced & the possibility of other complications also had changed. It was a relief and weigh lifted off our shoulders, but our little fighter wasn’t in the clear. She still had a transposition, a different heart, a unique one at that. About 0.5%–1% of all babies born with heart defects have CCTGA. This means there are about 5,000–10,000 people in the United States with CCTGA.*2
We saw the cardiologist one more time up until the delivery. On that beautiful, clear September day, our lives changed forever. She indeed had CCTGA, with a few more small concerns involved. Everything about her, including her unique heart, was perfect. She did not need surgery that first week, and we were incredibly fortunate enough to take our baby home without surgery.
19 months later, Scarlett just had her third check up with the cardiologist. It is about an hour drive from our home to the “big city” & unlike most car rides, she enjoyed her books, the scenery & the big trucks that drove by on the highway.
As we pulled into the large, parking structure of Legacy Emanuel & Randall Children’s Hospital, Scarlett had another idea. She yelled out, “HOCKEY!”. She thought we were at the Moda Center going to a Portland Winterhawks game. That’s our girl.
We checked in and got called back for her appointment. They went over all her vitals as usual, and for the first time, she stepped up on the big scale to check her weight. She was officially 25.9 pounds! We had been waiting for that milestone to come! We then waited for the doctor to arrive to do a check before she received her most recent Echo-cardiogram. She had so much patience throughout the entire appointment, from her Echo to her ECG.
All those wires, buttons & noises didn’t disrupt her much this go around.
Both Matt and I stated how calm we felt from the moment we walked in to after her tests were taken. Once the doctor had returned, he mapped out her heart and where we were out with her development, as well as what the next steps could be. She has what he would say is the best-case scenario for her condition. CCTGA, as well as a small hole and leak on each side, which had not changed since in utero.
An immediate operation is not necessary at this point and if it was performed, there could be more complications in the long run. Unlike the surgery that TGA would have consisted of, the surgery for CCTGA consists of a double-switch operation, which is no walk in the park.
She has never had any type of episode, fainting spell, shortness of breath or cyanosis, which are all indicators that something is not right. The heart is growing as it should & she is growing along with it. As we do day to day, minute by minute, we will growth with her.
At this point, the risks outweigh the benefits for an open-heart surgery, and why take that huge risk?
Our story is unique, just as everyone has their own. One reason I started this blog was to connect with other parents & caregivers that have been affected by CHD in some way or any type of congenital defect. Tell us how CHD has affected your life and let’s build a better community and awareness around these heart warriors.
Kuehl, Karen Dr., Jr. Murphy, Daniel, Verstappen, Amy, Adult Congenital Heart Association https://www.achaheart.org/your-heart/health-information/cctga/ . Accessed 1 May 2017
The Heart Center at Nationwide Children’s Hospital & The Ohio State University http://www.nationwidechildrens.org/congenitally-corrected-transposition-great-vessels. Accessed 1 May 2017.