Congenital Heart Day, February 24, 2012

It's official!!!

February 24, 2012 is officially Congenital Heart Day at the Colorado Capitol!!!

I'm not a fan of "copy and paste" on a blog, so I apologize for doing that here.  I received an email from a fellow CHD friend, Amanda Rose Adams, urging all of us affected by CHDs to make a large presence at the Colorado State Capitol on Friday, February 24, 2012.

Here is an excerpt of the email:

GREAT NEWS!!! We have a resolution at the Colorado Legislature.  Both the Senate and the House will vote on a resolution that will recognize congenital heart defects as a unique and urgent condition and celebrate Friday, February 24 as Colorado Congenital Heart Day!!!!! This was the compromise we reached with several stakeholders in lieu of a long term study necessary to adopt pulse ox screenings at our abnormal altitude.  The resolution calls for the study and a commitment from the Colorado Board of Health to make Congenital Heart Defects a health priority in our state.

I am so proud that Representative Fischer and Senator Boyd have supported and championed this work.  PLEASE, PLEASE, PLEASE share this message with all CHD families and adults here in Colorado or who are treated by Colorado doctors.  We need AS MANY families and adults as we can to come to the Capitol and be present, be counted, and represent the 50,000 Coloradoans impacted by CHD.  I'm making a Facebook page (you don't need facebook to see it) to post information about the gathering, but for now, please share this message ASAP - we need to prove that all CHD survivors and the lost still count.  We only have 9 days but we must be counted.  This silent disease will silence us no more!

http://www.facebook.com/pages/CHD-Counts-at-the-Colorado-Capitol/325136717522559?sk=wall  

Please come join us at the capitol on Friday, February 24, 2012.  If you are from southern Colorado and would like to be a part of the Mended Little Hearts of Colorado Springs group, please contact us at 719-235-3769.  You can find us on Facebook at "Mended Little Hearts - Colorado Springs" or check out our website at www. mendedlittleheartsofcoloradosprings.org.


Let's show Colorado how many people are affected by CHDs and flood the capitol on Congenital Heart Day!!!

Valentine's Day 2012

Valentine's Day...a day for sweethearts.

A day some remember St. Valentine, for whom the day is named.

For some it's a lovely, much-anticipated day filled with loving thoughts from the special people in their life.  For others, it's absolutely dreaded, pull-the-covers-over-your-head-and-don't-want-to-get-out-of-bed day, because they have a wounded heart.

For me, it's a day that reminds me of broken hearts.  Not "love sick" broken hearts, but the broken hearts of children and adults who were born with congenital heart defects.

I realize that Valentine's Day doesn't mean the same thing to every person.  I don't mean to trivialize other's feelings regarding whether they love or hate this day.  So what is my point exactly?

I want to make people stop and think about the 1.8 million people who are living with congenital heart defects in the United States.  These people have unique hearts.  You might never know that the man you are standing next to in line at the grocery store is listed for a heart transplant, has a pacemaker and an implantable cardioverter defibrillator (ICD).  You might never know that the child laughing and playing at the playground with your child has had 3 open heart surgeries.

Why?  Because they look just like you and me...except for the scars they bear from procedures and surgeries they've had to repair their broken hearts.  Because their scars are hidden beneath their clothes, their battle with congenital heart disease is not readily noticed.

Broken hearts???  Technically.

Unique hearts??? Definitely!

I prefer to say "Mended" hearts.

As you celebrate--or don't celebrate--Valentine's Day, take a moment to think about the many people living in the United States with congenital heart disease.  Think about how you can help make a difference in a family's life.  Check out our website here for events and links on how to donate.

Some of our MLH Heart Heroes helping out with the American Heart Association's 2012 Heart Ball.

Donate Life

I can't think of Congenital Heart Defect (CHD) Awareness Week without thinking about organ, tissue and blood donation.  Most CHDers will at some point in their life require a blood transfusion.  In fact, every day in the United States, 40,000 units of blood are used, and HALF of that is used by our CHD community... each day.

AnnaSophia has certainly required her share of blood.  For my daughter, her life not only depended on donated blood, but also the gift of a donated heart.

According to the United Network for Organ Sharing (UNOS), in the year 2004 in the United States, 234 children were waiting for heart transplants.  Of the 3, 491 people waiting for hearts in the U.S., roughly 7% of them are children.  Only 2,100 heart transplants take place in the United States each year.  Sadly, many people die because there are not enough people willing to donate.

Please consider becoming an organ, tissue and blood donor.

It truly is the gift of life.

Leave a legacy and make a difference in the world.

Help make the world a better place and become an donor today.  Click here for information on organ and tissue donation.

Congenital Heart Defect (CHD) Awareness Week 2012

AnnaSophia's Story

On December 31st, 2007, my life changed in a way that I never could've imagined.  From the moment my third child, AnnaSophia, was born, she was fighting for her life.  She had so many heart defects, I didn't think there was any way a child like her could live. She was born with an interrupted aortic arch, a ventricular septal defect (VSD), an atrial septal defect (ASD), and a bicuspid aortic valve. 

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.

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.