Hailie's Heart: HLHS, 21

Hailie's Heart: HLHS

My name is Hailie Anne. I was born on April 22, 1998 at Decab medical center in Decatur, Ga.

I was born with Hypoplastic Left Heart Syndrome with Aortic and Mitral Atresia.

The hospital where I had all 3 of my open heart surgeries was Egleston Children's Hospital now know as Children's Healthcare Of Atlanta At Egleston.

So far my heart has been stable these past few years, but I have had other health problems such as GI, Pulmonary, and Neuro. Plus the daily struggle with Mental Illness, Chronic Illness & Pain.

I take daily medications, but the best medicine I've ever received is my Service Dog, Eleanor.

I don't hardly eat anything as I am currently taking NG feeds for my GI issues, but when I do I stay away from certain things like sodas or energy drinks. I don't usually go out of my way to exercise as I already have low stamina and have been since the middle of 8th grade unless it's the occasional walk with Eleanor.

I have felt as though I've had low energy my whole life. I just slowly over the years noticed little changes in how much I was able to do. I ignored it at first just like any other kid but then it became a real problem when I would be practically hyperventilating trying to make it to class on time. I finally spoke up but when I did I felt as though my concern wasn’t heard because my cardiologist at the time was retiring. I got a new cardiologist and he order a Heart Cath and that was when they put stents in and improved my Oxygen Saturations.

The whole time I've been alive my family has been the most amazing support system. Sometimes I feel guilty for my birth because I try to think about my family before me. They were just a normal loving family and then I came into the world but in many ways I also think it just made my family stronger. My mother has always been my greatest supporter. I know there have been many times where they didn't think I wouldn't survive and she was always there and has always been there even when my family stopped coming to the hospital over the years.

Every test, every admission, every IV stick, she's been there for me.

In many ways she's a survivor just like me because she's been there for me every step of the way plus not only facing her own medical challenges as well.

I don't ever want to be a parent other than a dog mom. My CHD is so rare that the risk outweighs the benefit of having a child. Some people might say "Oh you will change your mind when you get older." But I really wont. If I'm blessed enough to make it farther into adulthood, then I would rather live out my life and my dreams than possibly die from childbirth. There are so many children in the world that need good homes, so I feel as though if I change my mind which I don't think I will but if I do I can adopt a child. So my plan is to have a partial Hysterectomy. My Cardiologist and Gynecologist are both in agreement of this as well.

There is a whole stigma in the general population when the words like Illness or Disability come up. Once people find out "something is wrong with you" then they start treating you differently.

I've always told myself and others that if I had been given a choice to have all the surgeries, all the wires and tubes, all the physical and mental pain, or to be a "normal" healthy person, I would still choose to be Chronically Ill. I know that might seem crazy, but think of it this way, I wouldn't have all the knowledge I've gained from learning about CHD, I wouldn't know all the wonderful people I know, I wouldn't have the most amazing family I have. Even still with all that said I still hope and pray we can find a cure.

I have a Facebook page for health updates that my mother manages. Eleanor has a Instagram that I manage if you are interested in following our daily journeys.

​Facebook: Hailie's Heart

Instagram: Eleanor_The_Extraordinary