My Parents Where Always Open and Honest with Me, and That Made All the Difference - Barbara Calvert

I will never forget the countless appointments and cardiac tests to evaluate my heart murmur. They revealed a coarctation of my aorta and a bicuspid aortic valve. This combined with my extremely short stature led to my cardiologist ordering a karyotype. I was diagnosed with classic Turner syndrome (TS) at age 6.

I soon began taking Protropin growth hormone. My parents, who later taught me, administered the injections. We rotated arms and legs to prevent bruising. I had surgery to repair the coarctation the summer before starting second grade. All I remember is waking up from the surgery and going to the playroom at Cincinnati Children’s Medical Center. I still have all the cards I received.

The hardest part after that and throughout middle school was balancing getting as much height as possible with my desire to mature like all of the other girls. After each bone scan to check my growth plates, I would be hopeful that I could start hormone therapy. I broke down crying in my endocrinologist’s office once during middle school because he recommended that we wait to start hormone therapy.

I believe that having TS contributed to me being teased a great deal when I was in middle school. Being small and underdeveloped made me an easy target. In addition, I have never been the most assertive person or stood up for myself a great deal. Throughout high school, college, and graduate school, Turner syndrome did not impact my life a great deal. I took my medications and was diligent about attending my annual check-ups.

I did well in school, got my driver’s license as soon as I turned 16, and moved to Massachusetts from Kentucky to attend Smith College. I was shocked when I learned that some women with TS do not drive and were told to attend college close to home. My parents never treated me differently because I have TS. I never received any negative messages and was never told that I was not capable of achieving my goals because I have TS.

My parents were always open and honest with. I have always known that I cannot have biological children and that there are major health concerns associated with this condition that must be monitored my entire life. My parent’s openness and honesty have made these difficult aspects of my life much easier to handle. I do not know how my parents intuitively knew to do these things, but I will be forever grateful that they did.

One instance from high school sticks out, though. My endocrinologist asked me about my senior year math grades. Upon learning I made my first C in calculus for one 9-week period, he said “Oh, when math reaches a certain level, it gets difficult for you.” I was offended and took his comments as implying I was bad at math. I was one of only approximately 10 students in my senior class taking calculus and graduated 4th in my class out of approximately 150 students.

Since then, I have always encouraged women with Turner syndrome not to let others tell them what they can and cannot achieve. I believe this motivated me and is part of the reason I earned my Ph.D. and am now a practicing psychologist.

One of the most memorable and coolest experiences of my life came because of having TS. My parents nominated me to be torchbearer for the 2002 Salt Lake City Olympics and I was selected! My entire extended family was there to cheer for me. It was such an honor to be recognized for the things I overcame.

In 2013, my cardiologist wanted me to follow up in 6 months instead of one year due to the size of my aortic dilation. It made me nervous, but I figured he was just being safe. After more imaging was done, it was explained that the size of my aortic dilation put me at risk for an aortic dissection. The rest of the conversation was hard to follow after I heard I might need surgery to replace my bicuspid valve and part of my aorta. In 2015, I was scheduled with a cardiothoracic surgeon and elected to have aortic valve replacement. Taking blood thinner and having my INR level checked regularly is annoying, but I am thankful that I did not have to have the surgery in an emergency situation. I continue to follow up with my providers and have great medical care. I am so grateful for the love and support of my family. I would not be where I am today without them.