Congenital Heart Disease Awareness


Congenital Heart Disease Awareness

Before January 2, 2014, I had no idea what a "congenital heart defect" was. We had 2 completely healthy children and expected our third to be the same. But it was on that day that I heard those words for the first time, words that changed me and my family's life forever.

My son, John, was prenatally diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Essentially, only half of his heart works. Thanks to modern technology and amazing advances over the past 20 years, he is able to survive through a series of 3 open heart surgeries. He had his first at 7 days old, his second at 6 months, and his third will likely be this summer, when he will be 3 years old. He will never be cured but this allows his circulation to work well enough.

John has been through a lot and has the scars to prove it. Yet, most days, he acts like a typical opinionated, hilarious, fiesty, 2 and a half year old. He is on track developmentally and physically; you'd have no idea that he has a special heart and a special story. We are incredibly grateful. Each morning John wakes up, runs into my arms and I think, "Yes! Another day with my sweet boy!"

I don't know what the future holds for him or the millions of children born with CHDs, but I do know that more funding is needed to further advancements. Here are a few facts about Congenital Heart Defects. Because awareness leads to funding. And funding leads to research. And research leads to the hope of a bright future for children born with CHDs, like my precious son.

Congenital Heart Disease Awareness

  • Congenital heart defects (CHDs) are defined as problems with the heart's structure that are present at birth.
  • Congenital Heart Defects (CHD) are the most common birth defects.
  • Nearly 1 out of every 100 babies are born with a CHD.
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • There are 35 different types of heart defects.
  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.
  • Surgery is often not a cure for CHDs. Many individuals with CHDs require additional operation(s) and/or medications as adults.
  • Congenital heart defects are common and can be deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.


Read other recent articles by Maureen Witmer:

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Adina & Maureen
Adina & Maureen

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