Haley's Story

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My name is Haley and I am very proud to be a part of this great charity.  My journey started August 29, 1994.  I was born that morning a happy healthy baby but after just sixteen hours of life I turned blue in my mom’s arms.  I was immediately rushed to Lutheran General Hospital, which quickly became my first home. They discovered I had a congenital heart defect known as Tetralogy of Fallot, which includes the narrowing of the pulmonary valve and ventricular septal defects…. vsd’s, or a hole in the heart.

After 4 days in the hospital it was determined that I would go through my first surgery.  The doctors concluded that they wanted to avoid open heart surgery until a later date when I was a little bigger and stronger.  They performed a shunt operation.  With a 98% chance of a successful surgery, luck was not on my side and the shunt “crimped” and failed.  The doctors re-grouped and on my 11th day of life I went through my first open heart surgery... 2 operations in 11 days!  As I look back that is a lot for a new born to go through!  This time the surgery was a success.   Another 3 weeks in the hospital to recover and now at 30 days old I was finally able to go home.

My first year of life went by quickly with frequent visits to the doctors.  Unfortunately my parents learned that 4 days before my first birthday I would be going through my 2nd open heart operation.   My parents said I showed determination and was able to get home in time to wake up in my crib on my first birthday.  I really don’t remember it but my Mom took a picture of me in my high chair with one candle in a Twinkie, a Tierra on my head and “steery” strips on my chest as a reminder of what I had been through.

My next 3 /12 years were just like any other kid growing up.  I played dolls and dress up with my older sister Allie and I became a big sister myself when my little sister Ashley was born.  I now had an older sister and a younger sister.  It was perfect for me!  But things were about to change.  As a four year old having just completed pre-school on a Friday in June I was on my way Sunday afternoon to Christ Hospital in Oak Lawn to go through my third open heart surgery, which was my first valve replacement.   They replaced my pulmonary valve with one they made from the sac of a cow’s heart.  So yes I’m part cow! This was the first surgery I remembered.   It was awful.  I was mad, scared and I am sure I did not make any friends in intensive care unit!  After waking up from surgery I told my mom and dad almost immediately that I wanted to go home.  I must be a pretty good salesman because only 48 hours after arriving at the hospital I was in our minivan and on my way back home to be with my sisters.  My parents planned my surgery at the beginning of the summer so I would be all recovered by the time school started in August.  Also, I wanted to get better quickly so I could sign up for soccer in the fall!  Taking the advice of my cardiologist Dr. Dubrow who told my parents “Haley will let you know what she can and can’t do” I was signed up for soccer and was on the field with my friends in August.  I wasn’t the biggest or fastest player but I do remember how happy I was when I scored my first goal.  I played 7 more years of fall, winter and spring soccer.  I’m glad I got a little bigger and a little faster!

My next 7 years were pretty normal although visits to the doctor every 6 months I guess are not normal but it was for me.  I was able to do everything I wanted to try… ballet, cheerleading, golf swimming and tennis.  I actually swam a 50 yard backstroke and breast stroke in a swim meet!  I was pretty proud of myself.  In 7th grade my best friend Caroline and I decided we were going to play tennis and eventually tryout for the high school team.  We started taking lessons as school started but soon after a 6-month check-up I was told I would need another valve replacement.  My valve had “calcified” during my growth over the last 7 years of my life and was no longer functional.  So Caroline and I played tennis until just before Christmas break.  That’s when Dr. Ilbawi and I decided to have my 4th open heart operation.  While this last surgery was not as bad as my previous experiences I was again determined to be home as fast as possible…. this time by Christmas!  My school holiday break was not ideal but I spent all of my time with my family and we made the most of it.  We played lots of board games, watched a lot of movies and I just rested.   Toward the end of the break I was allowed to have visitors to the house.  The first to come by was of course Caroline.  I was so happy to see her even though I was sore and not moving that much.   Caroline brought me a present… a brand new tennis racket…  She was telling me to hurry up and get better so we can get back to playing!  What a friend... I never looked back.

As I entered high school I tried out for the tennis and as a Freshman I played 2nd singles and Won 1st place in conference.  As a sophomore I played 1st singles on the JV team and Won 1st place in conference and my Junior I made the Varsity team playing 2nd singles and I finished 2nd in conference.  I just completed my last year of high school tennis and finished in 1st place at 2nd doubles in conference, 3rd place in Sectionals and qualified for the State championship.  It was a dream come true!  So that’s my story.  While it has been very hard to go through the operations it has made me who I am as a person today.  I am thankful that technology continues to get better, doctors continue to advance their knowledge and I have the opportunity to continue to live a healthy life.  With one more surgery ahead of me and the roller coaster ride I have been on, I am so blessed that charities like Saving tiny Hearts raise money to help all of us who have been challenged with a congenital heart defect.  I feel very fortunate that my family is involved with Saving tiny Hearts!  It has been a wonderful experience.

Written By Haley