Congenital Heart Walk

This weekend, my family and I will be walking (or running) at the Congenital Heart Walk in our area. You can go to this page to find a walk near you. The purpose of the walk is to raise awareness and money to help fund research. Honestly, before having a child with a heart defect I really didn’t know what they were. But now, with a special heart kiddo it’s VERY important to me that research is funded.

Some facts about CHDs:

  1. Congenital heart defects are the most common birth defect. The occur in about 1 out of every 100 babies.
  2. They are the most common cause of birth defect-related death in infants.
  3. People with CHDs will have life-long health complications like: growing, eating, developmental delays, heart rhythm problems, heart failure, sudden cardiac arrest, or strokes.
  4. 25% of children will need surgery or intervention in order to survive.

My son’s particular defect is Hypoplastic Left Heart Syndrome (HLHS).

  1. HLHS is one of the more complex, severe heart defects. The left side of the heart is underdeveloped. This is the side responsible for pumping oxygenated blood to the body.
  2. Without intervention, HLHS is fatal.
  3. There are 3 surgeries to reconstruct the heart: Norwood (which will occur, usually, within the first week of life), Glenn (somewhere between 4-6 months), and the Fontan (between 2-4 years old).
  4. Sometimes, children aren’t candidates for the 3 stage procedure and will be put on the transplant list. Hearts for infants are heard to find and a lot of the times children will die before they find a heart.
  5. Despite the surgeries, their hearts will never be 100% fixed or cured.
  6. Many times, children will grow up and end up needing a transplant.

Research for CHDs is underfunded because their so common. To me, that doesn’t make sense. If they’re so common shouldn’t we be funding MORE research? Research can possibly discover the cause and ways to prevent heart defects. Research could help discover new and potentially better ways to treat those living with heart defects.

Sure, on the outside my son looks perfectly “normal”, except for the occasional blue feet. On the inside, though, his heart is working double because only half of it really works. Instead of 4 chambers, he’s working off two: a common atrium and a single ventricle. He gets tired quicker than some kids. As a result of being on bypass, he had a stroke. This may or may not affect later development and movement in his right side. He will be on some kind of medication his whole life. These aren’t bad things! They can be frustrating but they aren’t bad. He’s living, so to me, these “side effects” are nothing. BUT if we can find ways to prevent this and save future mothers and fathers from the fear, tears, surgeries, medicines, wires, breathing tubes, catheters, monitors, and what seems like endless doctors visits then let’s do that!

So, I really encourage you to donate to the Children’s Heart Foundation. Help fund research.

Think of the children! 😉

 

You can donate here or here.

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