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.

Rabbit Trails and Detours

New times require new blogs.

My original blog, AnnaSophia--God's Miracle has been a wonderful tool to keep family and friends updated on my daughter's medical journey.  AnnaSophia was born with life-threatening heart defects which eventually led to her need for a heart transplant.  Over time, the blog evolved, containing not only medical updates, but updates on the entire family.  I wrote about my very personal thoughts as it related to watching AnnaSophia struggle to live and the challenges that our family faced. 

As our lives began to settle down, I became passionate about letting the world know that congenital heart defects (CHD's) are the number one birth defect in the world.  It kills more children than all childhood cancers put together.  I needed to let the world know about CHD's like I needed air to breathe.  AnnaSophia's blog will continue with updates about the children and, of course, information about congenital heart defects, but sometimes I've felt the need to write things that are "off topic".

That leads me to Rabbit Trails and Detours.

Rabbit trails typically have a negative connotation.  Most people see these paths as a waste of time, but I am optimist.  I love rabbit trails! Well, let me clarify.  Most people don't like being led away from the topic at hand, only to realize that it led them nowhere.  What I love are the unplanned little mental meanderings that lead me to new information, unexpected enlightenment or simply a wonderful laugh.  Rabbit trails are those thoughts that temporarily take over my mind, steering me away from my current thought process to an unexpected little mental vacation.  Sometimes there is treasure at the end of a these paths, and no matter how hard I try, I find myself hopping happily down a rabbit trail.

Detours.  Life is full of them.  We might have an idea of what our life will be like, but then there are circumstances that temporarily change our direction.  Sometimes detours take us down a different path, but to the same end.  Other times, detours can change the entire landscape of our life.  I've found myself taking a detour from what I originally envisioned my life to be.

After 15 and 1/2 years of marriage, I find myself walking down the path of divorce.  Divorce is the death of a marriage.  Death requires grieving, and I have grieved...deeply.  Divorce can be like an all-consuming wildfire that devours everything in its path.  So often I find myself trying to quench the flames of destruction, protecting my children like some crazed mama grizzly bear. 

Even though this is not how I envisioned my life to be, I have confidence in knowing that God knew this would happen.  He's led me through worse times of pain and uncertainty.  Like a forest that has been burned by wildfire, there comes a time when new growth appears and the soil is richer.

Divorce has caused me to re-evaluate my life and look at my future differently.  My goals are different now.  My reason for living is different now than when I was married.  My hope for my children is that God will take their wounded hearts and heal them.

Rabbit Trails and Detours.  A new blog for my new life.  My desire is that we will find treasure down our rabbit trails and companionship on the detours.  And please, if there is a rabbit trail or detour that you would like to see me write about, please let me know.

Blessings.