Meet Sophia in Lake Forest

Updated:Oct 17,2012

KWH Sophia B ILMy name is Sophia.  I am nine years old and in fourth grade.

My mom said that we are very lucky to know that my heart was special. 

When I was only a few weeks old, my pediatrician told my mom that my heart sounded different than other babies and that we should go to a special heart doctor to get it checked.  

The cardiologist found holes in my heart which are now gone, but also found that my heart muscle looked different from other kids.  I was only a few months old when I was diagnosed with Hypertrophic Cardiomyopathy, also called HCM for short!

So I have been going to a heart doctor every three to six months since I was a baby.  At every visit the doctor put stickers on my body to listen to my heart, and took pictures of my heart with a special camera.  It never hurt, I just had to lay very still!   My doctor was in Chicago at Children’s Memorial Hospital and was very nice. 

They found that a section of my heart muscle was too thick and growing faster than the rest of the other heart muscles.  It was starting to block the clean blood that was leaving my heart and traveling through my body.  It was also pulling on the little doorway called a valve where the blood gets out of the heart.  The doctors said that I would need surgery someday but they didn’t know when.  I felt tired all of the time and had no energy. 

Right before my 7th birthday in May 2010, my heart doctor said that it was time that I meet a surgeon who could go into my body and fix my heart. 

At the end of June, we left for the hospital in Minnesota.  I was excited that I was going to get to go to recess again and run around with my friends!  However, I was a little scared to have open heart surgery because I don’t like shots.   I was scared when I got the anesthesia too.  Afterwards, I had my own room at the hospital, and had to walk with a walker.  There was a game room where I played games with my parents.    I got to go home after four days because I was feeling great, and had to relax for a few weeks to rest. 

At first I walked slowly and had to blow into a special tube every day.  By the end of summer I was going swimming at the pool and jumping off the diving board! 

I have so much more energy and feel so much better since I had heart surgery.   I feel clean inside my body, like it is much easier to breathe.   I can run and go to gym and play with my friends at recess.  My favorite things are horseback riding, ice skating and singing.   I will always have hypertrophic cardiomyopathy and still need to be careful to listen to my body, and stop if I get tired, or feel dizzy or hot.   I also try to eat healthy food choices, drink lots of water, and get lots of sleep.  I also still take medicine every day to keep my heart pumping slower. 

And I am very proud about the scar I have on my chest and show people all of the time.  It helps me remember forever that my heart is special and that I am brave.