It is Heart Month and today is the start of congential heart defect awareness week (Feb 7th-14th).
So you'll read in this articel/post a bit about congenital heart defects, some of my own story, and I hope you'll spread the knowledge about congenital heart defects!
So first things first a CHD is a congenital heart defect, it's abbreviated and often times used interchangeably with congenital heart disease however, that is not the proper nor accurate use of the abbreviation. Let me break it down, a congenital heart defect is a structural deformity in the heart that is present at birth. Congenital means present at birth. The Heart is one of the most important organs in your body, pumping blood, oxygen, and nutrients throughout the body. A defect is deformity or imperfection. So when you take the definitions of each individual work and bring them together a congenital heart defects is a deformity in the heart that is present at birth. A disease is a lack of ease in the bodys' function, a disposition regarded as adversely affecting a person, implying sickness. As you can see defects and diseases are no where near similar and shouldn't be used interchangebly.
Congenital heart defects are the #1 leading cause of birth related deaths. And because of this I want to leave you with some more information and stats:
- According to Mended little Hearts 1 in 110 babies are born with a congential heart defect (that's less than 1%).
- And around 1 in 4 babies with a congenital heart defect will have a critical congenital heart defect.
- A heart defect can form within 30 days of a woman's pregnancy.
- More times than not children with heart defects have learning barriers. Because the heart is the organ that pumps oxygenated blood to organs, like the brain, a structural deformity results in the heart not efficiently pumping enough of the oxygenated blood to the body's organs while they are developing. This lack of healthy oxygenated blood hinders the development of the brain which most commonly hinders memory, ability to focus, and ability to concentrate (and this goes into adulthood as well).
- The median age of CHD related deaths is 1 year old
- Some of the most common heart defects are:
Ventricular Septal Defect, VSD, is a hole in the heart's wall between the lower chambers.
Atrial Septal Defect, ASD, is a hole in the heart's wall between the upper chambers.
Pulmonary Stenosis is when the pulmonary valve is too narrow hindering the outflow of blood from the heart.
Single Ventricle Defects are abnormalities that affect the lower chamber of the heart, resulting in a small or undeveloped chamber. Single Ventricle Defects include Hypoplastic Left Heart Syndrome, Pulmonary Atresia, and Tricuspid Atresia.
As for me I was born with 2 congenital heart defects: Truncus Arteriosus and a septal defect (hole in my heart) I'm not just a heart warrior but a rare one. From the exterior I appear generally healthy and from my looks no one would associate my experiences or diagnosises with my looks. 1 in 16,000 children born in the United States are born with Truncus Arterious and I'm one of them (that's less than 250 cases a year). And that's my most rare condition I have other heart defects and health ailments that hinder my human experience and day to day performance. That's why I take my time to spread awareness. After a highschool teacher watched me endure heart complications and say "I didn't even know you had a heart as mean as you are" (even though I'm not mean I just don't fall in line with any ole thing and make you think for yourself) I remember making sure I would be more vocal about my health conditions because I don't look like what I am.
To reduce the burden and effort that gets put on a person once they gain a certain degree of knowledge I wouldn't tell anyone when I'd be struggling to breathe, or when I felt lightheaded, or when my entire body would thump like my heart. So I know I've got to do better and this is just the beginning. To gain greater insights on a sliver of my experience check out my memoir: From the Heart.
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