Turner Syndrome Awareness Month: TS and Heart Defects

Did you know that February is not only Turner Syndrome Awareness Month but also Heart Month at BC Children’s and other hospitals around the world? This is quite fitting because many girls with TS also deal with heart defects such as a bicuspid aortic valve, coarctation (narrowing) of the aorta, and aortic dissection or splitting/tearing of the aorta. They can also have high blood pressure, high cholesterol, and chest wall deformities such as pectus excavatum in which the sternum and sometimes the ribs are inverted which, if bad enough, can impact the heart and lungs. Many of these congenital heart defects are part of the reason why so many babies with TS never make it to term. Some of these problems can start in adulthood and are fatal if not caught soon enough which is why its important for girls with Turner Syndrome to have regular echocardiograms and cardiac MRIs even if they haven’t had any heart issues in childhood. It is also important for girls with TS to stay active to keep their heart healthy and strong. Thankfully my heart has checked out fine thus far and my pectus excavatum only involves my sternum and is very mild.

One of my earliest memories involving my heart was when I was seven years old. My endocrinologist and pediatrician had noticed a heart murmur and sent me for a bunch of tests to check that everything was alright with my heart valves, particularly wanting to make sure I didn’t have a bicuspid aortic valve. This involved doing a stress test which was hilarious for someone of my size because I was so small and kept sliding back on the treadmill. I also had to wear a 24 hour Holter monitor to school and got to give a talk to my class about TS and why I was wearing it. The best part was that my parents would always take me out for lunch to Wendy’s or McDonalds after a morning spent at Children’s Hospital which was a real treat since it was the one time they would pay extra for the kids meal rather than buying off the value menu. Much to my parents relief, all the tests came back benign.

The next time I remember my heart becoming a concern with my doctors is in my teenage years. Starting hormone replacement therapy had caused me to gain weight and my blood pressure and pulse were on the high side. They sent me to a cardiologist and I remember having a very bad experience with them and getting chastised for not being active enough. I had never had good hand eye coordination (see my post on Non Verbal Learning Disorder to delve further into why this was) and, being on the smaller side, was always intimidated by team sports, afraid of being made fun of and ostracized since I wasn’t very good at them. My parents did put me in swimming lessons but I wasn’t the best about getting consistent exercise. Thankfully all my tests came back fine and I didn’t have to see that cardiologist again, however I know that many girls with TS aren’t so fortunate and I don’t take for granted how blessed I am to have a healthy heart. One of my best friends with TS has dealt with heart issues since birth and has undergone not one but two open heart surgeries. I am so inspired by her strength, faith, and the pride with which she wears her scars and am so grateful for her example. I’ll admit, even though I’ve passed every cardiac test so far, I still get nervous every time that there will be bad news. Living with a condition that puts you at risk for so many health issues, especially ones that can be life threatening, is scary and I couldn’t imagine going through it without my faith. Knowing that Jesus is there with me through every test helps ground me and keep me calm. I am able to give it over to him, trusting in His promise that He will be with me whatever the results.

“My flesh and my heart may fail,
    but God is the strength of my heart and my portion forever.”

Psalm 73:26

“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.”

Isaiah 43:2

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