The Story of Shauna and her Life with Congenital Heart Defects

The Story of Shauna and her Life with Congenital Heart Defects

Did you know that 1 in every 100 babies is born with a heart defect?

Did you know that 50% of them are at risk of death if their defect is not surgically corrected?

How about that Congenital Heart Disease is the NUMBER ONE MOST COMMON BIRTH DEFECT?

It is also the number one cause of infant mortality. You'd think that would be more widely known and publicized, but it isn't. Most people think of other defects when they are asked about the most common. Because Congenital Heart Disease (or Defects as it was previously known) has so many different ways to manifest itself, many people don't put it all together.

Nationwide Children's Hospital, in Columbus, Ohio, is where I have been treated for my Congenital Heart Disease since it was found when I was six weeks old. Below is their infographic. They have done so much for me, I love to spotlight them when I can. (Click the infographic to go to their site where it's larger)

My friend Shauna was one of those that was almost lost in the transition from pediatric to adult care. The ACHD staff was able to save her life and help her get onto a road of living with her CHD in a way that would keep her on the healthy end of the spectrum, well as healthy as one can be with Congestive Heart Failure anyway.

She is enough to be with one of the only children's hospitals in the US to allow treatment of adults with CHD. This is very important because the continuity of care can sometimes be the difference in catching something small before it becomes a big issue and severe complications that could lead to death. Nationwide Children's Hospital also works with The Ohio State University to ensure the best care for their ACHD patients. They are also the only program in the MidWest that is training other cardiologists in ACHD care. The other cardiologists can then go to other regions of the country where there is a lack of ACHD clinics or ACHD care in general and start an ACHD program.

Image result for treating hearts of all shapes and sizes

You see in the infographic above that there are over 1.5 million adults in the US living with CHD. A sad statistic, verified by achaheart.org, is that less than 10% of those 1.5 million are receiving the specialized care that they need. Most were lost in the childhood to adulthood transition. There is no cure for CHD. You need lifelong treatment.

Learn more about ACHD myths HERE.

Happy Heart Month!

A bit about Shauna:

I was born with several heart defects. Although, mine were not immediately life threatening they did make my childhood a little more, well, unique than others.

I remember playing in the snow and being told to go back inside because my lips were blue. I'd be swimming and be told to go sit at the edge of the pool because my lips were blue. I didn't quite understand how my lips could be blue when it was nearly 100 degrees outside.

I was diagnosed with several defects including Atrial Septal Defect, Ventricular Septal Defect, Transposition of the Great Vessels, & Pulmonary Stenosis.

Want to know Five facts about Congenital Heart Defects (CHD)?

Check out the CDC's information here and trust me you will be surprised.

CHD are the most common type of birth defects. Most people don't know that.

Did you know that the cost incurred by CHD patients, their family, and the tax payers is over $1 BILLION per YEAR!!!

So many other facts are found on the CDC's website.

I'm looking forward to writing more content on CHD and other health related topics. What do you folks think?

You can follow Shauna's story on Instagram at:

https://www.instagram.com/snl79ohio

Did you know that 1 in every 100 babies is born with a heart defect? Did you know that 50% of them are at risk of death if their defect is not surgically corrected? How about that Congenital Heart Disease is the NUMBER ONE MOST COMMON BIRTH DEFECT? It is also the number one cause of infant mortality. You'd think that would be more widely known and publicized, but it isn't. Most people think of other defects when they are asked about the most common. Because Congenital Heart Disease (or Defects as it was previously known) has so many different ways to manifest itself, many people don't put it all together.

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