AnnaSophia and the American Heart Association

Recently, I have become very involved in our local Mended Little Hearts organization here in Colorado Springs.  We are a group of parents who are passionate about helping other families who have been affected by congenital heart disease (CHD).  The goal of our group is to plan fun events for our "CHDers", provide a support group for the parents, education about CHD's, fundraising for research and continued support to our families.  It is a national organization with groups located in cities across the United States.  You can click here for more information on Mended Little Hearts.

I have also started volunteering with our local American Heart Association.  With 1 out of 2 people affected by heart disease, and 1 out of 100 children born with a CHD, this seemed like a natural thing for me to do.  I have become involved with the Passion/Education Committee for the 2011 Heart Ball, which will be held on February 12th, 2011.  Part of what I have been working on with this committee is helping to put together the survivor gallery for this event. 

The survivor gallery features 7 children from our Colorado Springs community who have battled congenital heart disease.  AnnaSophia is one of the children whose photo and story will be featured.  This gallery will travel throughout southern Colorado to many businesses for the purpose of raising awareness about not only congenital heart disease, but also childhood obesity and childhood acquired heart disease due to lifestyle choices.  Our hope is to have the gallery travelling by the first week in November. 

I will continue to keep everyone posted on the schedule of the gallery so that friends and family may visit it.  This has been an incredible opportunity to put CHD's and acquired heart disease on people's minds.  I want to educate, inspire and save lives.

Kristi Steeger, our amazing photographer, did an incredible job of capturing the spirit of our CHD children.  She selflessly donated her time to photograph each one of the survivor gallery children, and has worked closely with the American Heart Association to make this gallery a success.  You can see a sneak peak of the photos by visiting http://www.kristiannephotography.blogspot.com/.

For more information on the Southern Colorado American Heart Association click here.

Here is a sneak peak of AnnaSophia's bio for the survivor gallery:

AnnaSophia's Story

Congenital heart defect was something that never entered my mind until the birth of my third child. AnnaSophia Elizabeth Berry was born December 31st, 2007. It wasn't until she was 9 days old, and her oxygen requirements continued to rise, that she was diagnosed with multiple heart defects: an interrupted aortic arch, a large ventricular septal defect (VSD), an atrial septal defect (ASD) and a bicuspid aortic valve.

She was rushed to Denver Children's Hospital where she underwent open heart surgery at 11 days old. My heart broke for my little newborn baby girl, and the challenges that she faced at such a young age. I didn't even know if she would survive. Most of her defects were corrected at that time, except for her bicuspid aortic valve. That surgery would have to wait till she was much older. Her little heart was so swollen that her chest had to remain open for two days. She developed junctional ectopic tachycardia after surgery, and medication was needed to control her exceptionally fast heart rate.

Over time, AnnaSophia's heart started having a hard time pumping blood through her bicuspid aortic valve, and she was diagnosed with heart failure. She was seen by her cardiologist every 1 to 2 weeks, and more medications were added to help her heart function better. As the heart failure progressed, she also developed pulmonary hypertension. It was frightening and heartbreaking to see how swollen she was, due to fluid retention. Because she did not have enough blood flowing to her digestive system, she vomited most of her feedings. AnnaSophia was at risk for sudden cardiac death.

At 5 months of age, she was listed for a heart transplant at Denver Children's Hospital. I was never so frightened in my entire life, as I waited and watched AnnaSophia struggle to live. Three weeks later, she received the miracle that she needed. On July 11, 2008, she underwent a heart transplant. After her surgery I was amazed at how pink she looked, but she still had challenges. She struggled with complications due to her pulmonary hypertension. The afternoon of her transplant, she went into cardiac arrest. At that moment, I felt like my heart had stopped too. The doctors saved her with life with CPR, and additional medications.

She was discharged from the hospital one week after transplant, but her challenges continued. She started rejecting her new heart a few weeks later. She received medications and chemotherapy-type infusions to suppress her immune system and combat the rejection. As the rejection improved, she developed a very dangerous CMV (cytomeglovirus) infection. The virus lives dormant in her heart and can cause her issues at any time.

AnnaSophia's first year of life consisted of surgeries, medications, pic lines, feeding tubes, infusions and transfusions. She had no idea how sick she really was. She smiled and cooed her way through heart failure, rejection and infections. She has an amazing strength and spirit that inspires me daily.

Today, AnnaSophia is an amazing and vibrant little 2 and 1/2 year old. She is doing very well, and looking at her, no one would know that she has battled congenital heart disease and had a heart transplant. 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.