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What is a Congenital Heart Defect?

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I hate statistics. Not because I suck at math (which would be true) but because I gave birth to one. My 10-year old son is a part of one of the largest, least talked about and most underfunded statistics in the world. When Caden was diagnosed with a rare congenital heart defect at two months of age, we were told that without repeated open heart surgery he had a 0% chance of survival. I hate those odds even more than I hate the statistic they represent.

What is a Congenital Heart Defect?

I have handed my child over to heart surgeons on three separate occasions. And each and every time, I knew that it may be the last. The last time I looked into his eyes. The last time I held his hand. The last time I kissed his cheek. The last time I told him that I loved him. I was aware that they would stop his heart, and every time as I sat in the waiting room I felt fortunate to be there.

I feel fortunate every day for the simple fact that not too terribly long ago his chances of survival would have been zero. Without a doubt, no questions asked, his heart would not have been able to support his body. To even attempt to “fix” him simply would not have been an option; he would have died. I feel very fortunate indeed.

What is a Congenital Heart Defect? Statistics You Need To Know From a CHD Mom

February is Congenital Heart Defect Awareness Month. Since there are no real answers as to why CHD occurs, unfortunately there is no prevention and there is also no cure. We can, however, raise awareness and ultimately funding for research so that children like mine have more of a fighting chance using the treatments that are currently available.

What can you do to help? Simply share these statistics with your friends.

Statistics of Congenital Heart Defects

Statistically speaking, congenital heart defects (CHD) account for more birth defects than any other kind of birth defect. About 40,000 babies are born with a CHD in the United States each and every year.

Statistically speaking, CHD kills more children each year than all childhood cancers combined. Those born with CHD also have a higher risk of developing other heart conditions as they age.

Statistically speaking, there are 21 recognizable forms of CHD and by the time a woman discovers she is pregnant the defect has probably already occurred.

Statistically speaking, 25% of those 40,000 children born each year will require medical intervention (catheterizations, medications, open heart surgery etc) during their first year of life – just to stay alive.

Statistically speaking, about 1.7 million Americans are affected by CHD, and that number is growing every year. It is growing because of medical advancements that allow CHD survivors to live longer, healthier lives. While their life expectancy may not be “average” it is a heck of a lot longer than it used to be.

Statistically speaking, half of the 1.7 million Americans affected by CHD also have neurological and developmental difficulties. CHD not only affects the heart; it affects (among other organs) the brain, the liver, the kidneys and especially the lungs.

Statistically speaking, in an elementary school of 500 children, approximately five of them have some form of CHD. Chances are your child knows someone like my child (and may not even realize it).

Every year, the average age of those living with CHD rises by about 5%. This is a direct result of the medical advances made possible through research and funding and awareness of CHD. Help continue this trend by sharing this post. My son and I thank you!

More heart resources:

What I’ve Learned Being a Parent of a CHD {Heart} Child
Caden’s Feet: Walking the Path of CHD
A Letter to My Heart Child on His Birthday
Warning Signs of Heart Failure in Children
Finding Free Heart Screenings for Your Little Athlete + Why You Need One (Anthony Bates Foundation)
Reasons The Ronald McDonald House Is More Than Just a Room

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5 Comments

  1. I’m in the same situation! I was born and raised in Viet-nam, my father is French and my mother is Vietnamese. I was born with heart defect and have hole ,they’re calling licking valve years 2004 and now I have replaced the Aorta valve in may 2021. Thanks for the update, thank you! And praying to god’s that’s we are doing OK! God’s blessings all of your.
  2. My sister had a congenital heart defect. She had a heart murmur since she was little, but never had symptoms. At the age of 22 she got bit by a cat and ended up in the hospital with a bone infection in her hand. Luckily, the Doctor had a sister with the same CHD and he recognized the murmur and had her get tests right away. By this time she had severe fatigue because of the regurgitation of blood. Apparently it was a thinning of the muscle near a valve. She had open heart surgery and had it fixed.Unfortunately she had to get a pacemaker several years later due to scar tissue, but she is 57 now and has two adult children. She has some heart issues, but if it wasn’t for that Doctor, she wouldn’t be alive.
  3. I was a CHD child but required no surgery thankfully because now they have made so many advancements. It would have probably been the end of me to go through open heart surgery 60+ Years ago. Now at 65 I had my first heart surgery replacing 2 valves. It saved my life but was oh so scary. Your little man must be extremely brave and his momma too. My mom was very worried st 89. I'm still her little girl in her eyes. Thanks for spreading awareness!! I'll look for a way to help and contribute. Heart surgeons are also so brace and skilled. I give thanks for them everyday. When they helped me my lungs had shut down to a place where I couldn't get up a flight of stairs without blacking out.
    1. Oh Claudia, thank you for stopping, reading, and for leaving a comment! My mother had open heart surgery in 1964 at the age of 8 and I am STILL in aew that they were able to perform such a risky surgery back then. I'm glad you have had your surgery and doing well! Heart hugs to you.