Hailey and her story

In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today, we have the opportunity to hear from Hailey, who herself was diagnosed with a congenital heart defect (CHD) just hours after being born. We recently posted her mom Brigette’s story. You can read it here.

My name is Hailey Steimel. I am 20 years old and I was born with a Congenital Heart Defect (CHD) called Transposition of the great vessels. I have two sisters — a twin, Hope, who was born with a hole in her heart, and Hannah.  

When I was little I remember having to go to the cardiologist at least once a year for a bunch of tests, as well as having to take an antibiotic before any dentist appointments so that I wouldn’t get an infection. If I got tired, I was told to sit and take a break. Most of my friends did not know that I had any heart issues unless they saw my scar.

I was fine and I felt pretty normal until I turned 16.

Hailey_in_the_hospital.jpgIn October of 2012, I got really sick and couldn’t seem to get rid of a cold. After multiple doctor appointments, I was sent to the University of Iowa Stead Family Children’s Hospital (U of I). It was there that my family and I found out that kids with my defect, and my same surgery that I had when I was just a year old, needed heart transplants. 

Needless to say, I was very angry that this was the first time we had heard about this happening. I was also upset and scared because I did not know what was going to happen. 

That winter and summer things got worse. As my legs and arms began to swell, I started to get more fatigued and didn’t have much of an appetite. 

On August 19, 2013, I was admitted to the hospital in congestive heart failure and listed for a heart transplant. Though I was very scared, I was also happy that I might be able to get a new heart and feel like my old self again. During the two months I was there, I had to have a PICC line and a surgery to put a ventricular assist device (VAD) on the right side of my heart to help it pump. 

On November 4, I was the first pediatric patient to go home with the VAD from U of I.  This made me pretty nervous.

At home I was very bored waiting for my new heart. It seemed like it was taking so long and there were times when I felt like I would never get my heart.

Finally, on February 13, 2014, we got the call that there was a heart available. I was super excited, but also very sad, because I knew that someone had passed away in order for me to get a heart. My heart was placed on Valentine’s Day. 

Today, I still think about my donor and how he changed my life. I’m thankful that I am a normal 20-year-old and can do normal 20-year-old things now. 

I feel better than ever.

More information about congenital heart defects can be found at the Center for Disease Control & Prevention (CDC).

Don’t forget to check out other first-person accounts about kids with CHD on our blog page.

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