AnnaSophia's Story
At 11 days old, AnnaSophia underwent her first open heart surgery. I was amazed at the surgical techniques the doctors at Denver Children's Hospital used to repair her heart, but she still struggled. She limped along on the heart she was born with, not realizing she was so sick. She smiled and cooed her way through heart failure that progressed rapidly. Finally, I was told that she would not be able to live much longer with her heart. She was at risk of sudden cardiac death. Her only chance at life was a heart transplant.
Three weeks after being listed, she received the gift of life in the form of a new heart. She looked amazingly pink after her transplant, but she wasn't out of trouble. She battled rejection and CMV (cytomeglovirus) infections that required pic lines, chemo-type infusions and hospitalizations. She faced these setbacks with great determination and lots of smiles.
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| Mason, AnnaSophia's Donor |
Today, AnnaSophia is an amazing and vibrant little 4 year old. She is doing very well, and looking at her, no one would know that she has battled congenital heart disease. She continues to be at risk for rejection, infections and many other complications. AnnaSophia has had 12 surgical procedures in her short life. She has 31 scars on her little body, the most obvious being the zipper down the middle of her chest. They serve as constant reminders of the journey she's walked, the challenges that she still faces and the miracle that she is.
There are circumstances...well, challenges, that changes a person's life dramatically. For me it was the birth of my third child and her battle with congenital heart disease. When AnnaSophia was diagnosed, it felt like the rug had been pulled out from underneath of me. Like someone had punched me in the gut. Like my breath was being sucked out of me....
She was nine days old, we were at the pediatric cardiologist's office, and she was crashing. It was at that moment that we were told she had several heart defects.
Heart what???? Defects??? My perfect looking, little baby girl???
I had never heard of congenital heart defects before.
What I didn't realize is that heart defects are the most common birth defect in the world, affecting 1 out of 100 babies born.
Congenital heart defects kill more children than all forms of pediatric cancer combined.
Congenital heart defects are the #1 killer of children under the age of 1.
40,000 units of blood are used every day in the United States. Half of that is used each day by our congenital heart defect community.
Congenital heart defects don't discriminate. It is an equal opportunity killer. No matter your race, gender, socioeconomic status, the numbers are still the same.
This is why I do what I do. I am currently serving as the Co-Program Coordinator for a group called Mended Little Hearts of Colorado Springs. I want to provide emotional support for families whose children have been diagnosed with congenital heart defects (CHDs). I want the world to know about CHDs. I want to help raise money for research so that these children have a chance at full, happy, healthy lives. My hope is that medical advancements will continue to improve the lives of people faced with congenital and acquired heart diseases.
I want to Change the World...
Join me. Check out our events scheduled for Congenital Heart Defect Awareness Week here in Colorado Springs. We kick off the week with a proclamation signing by one of our city council members officially declaring February 7th through the 14th, 2012 as Congenital Heart Defect Awareness Week. We have six blood drives scheduled for the week, fundraisers, and speaking engagements.
Please check out our website at www.mendedlittleheartsofcoloradosprings.org or click here for more information.
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