When Open Heart Surgery Opens Your Heart

February 6, 2019

 

 

 

My whole life I knew I was different; from the moment I was born to the day I was diagnosed with Turner syndrome. A disorder only found in women, and normally found early in life, it happens when one of the X chromosomes is either damaged or missing entirely.

 

I was diagnosed at age 5. My amazing mother knew something was wrong from a young age. She took me in and got me tested for multiple things, and they came back with Turner syndrome. I became the 1 in 2000, and I was off to other doctors for further testing. Along with TS, I was diagnosed with hypothyroidism, a dilated aorta, a bicuspid aortic valve, ADD, anxiety, hearing and vision problems, learning disabilities, and, well the most noticeable characteristic was my short height. At 17 my heart condition finally caught up with me.

 

In November of 2014, I got a cat scan and a normal check up with the cardiologist. A couple of weeks later my mom and dad told me they had to operate, I blanked out and broke down right then and there. That night I lied awake just thinking about my life and the people in it.  What would happen to my family and friends if things didn’t go as planned? What about basketball, the sport I have loved since I was a kid?

 

The next day I went to school and saw my friends and knew right then and there what had to be done.  A couple of weeks later I was surprised by my teammates; they promoted me to the varsity team and honored me by dedicating a game all for me. I was on cloud 9!

 

Then on January 21, 2015, I had open heart surgery to repair the dilated aorta. After a week in the hospital, I went home and was met with love from friends and family. But here’s the funny thing, when you look at me, you barley notice a thing. I look like a normal 21-year-old woman who lives and loves life, Christ, and my family and friends.

 

When I look back at my journey dealing with this disorder, researching, and hearing other woman’s stories, I realize I am very blessed. Things could have been a lot worse. But, with proper medical treatment and the love and care of my family and the Lord watching over me, I have been able to live a relatively normal life. I finally am coming to terms with my disorder and now feel as if I have some closure to what Turner syndrome is.

 

Through my content on YouTube, film, and posts on my other social media channels, I am now on a mission to bring more awareness to Turner syndrome. If any woman out there has TS and sees my story, I want you to know that I SEE YOU, I HEAR YOU and I GET YOU. You are STRONG and you are BEAUTIFUL. This syndrome does not define you! Even though I am different, I never let it get to me. I learned to just live my life like any other woman. You can do anything you dream of. Go out there and live the best life you can. Never let anyone or anything tell you differently.

 

 

Additional Resources

 

Download the TSSUS  "Patient Guide to Turner Syndrome and the Heart"

 

Download the Patient and Family friendly version of the Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome