The Journey of a Sweet Little Boy and His Special Heart

Monday, February 7, 2011


There is an incredible amount of awareness and education surrounding adult heart disease, but very little about the number one birth defect or leading cause for birth-defect related deaths.

Did you know:
  • Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States
  • CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide
  • Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding
  • There are currently 35 distinct CHDs recognized
  • There is no known cause for CHDs and there is no cure. Only treatment, such as medicines, numerous surgeries and heart transplants.
  • Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect
  • 1 in 10 of those are born with a fatal defect

If you would have asked me a year ago what CHD was, I probably would have said congestive heart disease (thinking Congestive Heart Failure).  I was well aware of adult heart disease, but had no idea about Congenital Heart Defects in children.  And then my little Logan was born in May 2010, and I am now very aware of what CHD is.  You see Logan came home from the hospital with a clean bill of health.  It wasn't until he was 4 days old and we took him in for a billiruben check that his pediatrician heard the heart murmur. 
 That heart murmur was a combination of a small right ventricle (Hypoplastic Right Heart Syndrome), a very large VSD (Ventricular Septal Defect), an ASD (Atrial Septal Defect), and a small and deformed Tricuspid Valve (similar to Tricuspid Atresia). 
At a young 8 months old Logan has undergone 3 major open heart surgeries.  The Pulmonary Artery Banding at 2 weeks old in June '10.  A VSD repair and PA band take down Dec. '10-  this was an attempt to allow him to function on both ventricles, but his body did not tolerate this repair and he went into severe acute heart failure New Year's Day 2011.  He had his 3rd surgery Jan. 10th 2011 the Bi-directional Glenn (just 11 short days after his 2nd surgery).  He has also had 2 Cardiac Catherizations and more echo's than I can count.  With yet another major surgery needed in the next year or two.
This is more than any Mom would ever want to have her child go through, but I am thankful EVERY day for the doctors who dedicate their life to giving babies like mine a chance at life.  Logan could not be here if it wasn't for the research and dedication of these great people. 


  1. Amen Heidi, Amen.
    We think it is easy to overlook the gifts of life. But really the gift is what it is all about.

  2. You are the one that opened my eyes to this world and it amazes me how many people are going through the same thing. I had NO idea about all of this! I am grateful for people like you willing to share your story with ignorant folks like me and be patient with our possibly offensive, but well intentioned comments! Love and prayers to you and your sweet family still continue. You are amazing Heidi! Keep your faith and attitude!