Tag Archives: congenital heart defects

Hello pacers! A little Q&A about your pacemaker

28 Jan

by Carolyn Thomas    @HeartSisters

Here at Heart Sisters World Headquarters, I’m often contacted by readers with impertinent questions like: “Why don’t you ever write about ______?” (insert your own specific diagnosis here). One in particular was a 2015 reader question that read: “Why don’t you ever write about congenital heart defects?” On that particular morning, I was feeling tired, sick and “grumpy” (as our little Everly Rose calls every feeling she has that’s not happy). I wanted to snap back at this reader that I’m not running the Encyclopedia Britannica here…

But in a remarkable coincidence – and luckily before I had a chance to snap – on that very day, another reader named Aletha happened to share with me her own amazing story as an adult living with a heart condition she’d had since birth. That weekend, I ran my first ever blog post about this cardiac condition, called “When babies with congenital heart defects grow up“. 

And recently, a similar reader contact reminded me that I’ve never covered the topic of cardiac pacemakers – until now. Continue reading

The delayed ‘Trauma Drama’ of heart disease

26 Feb

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by Carolyn Thomas    @HeartSisters

Summer Ash is a self-professed space cadet. She’s an astrophysicist at Columbia University’s Department of Astronomy in New York City, where she serves as the Director of Outreach. Five years ago, she underwent open heart surgery after she was diagnosed with an aortic aneurysm (that’s when the tissue of the aorta balloons out dangerously). This condition was likely linked to a congenital heart defect Summer was born with called a bicuspid aortic valve. About 99% of people, she explains, are born with a normal tricuspid aortic valve (meaning three leaflets in the valve), but she was one of the 1% born with only two. With her kind permission, I’m running her story here as it was originally published in 2014 on her blog, Defective Heart Girl Problems.
Continue reading

When babies with congenital heart defects grow up

17 May

by Carolyn Thomas    @HeartSisters

hands-105455_1280In 2005, it was estimated that for the first time in history, there are now more adults than children living with childhood heart defects. That sounds like good news to me, because it means that due to major advances in medicine over the past few decades, more than 90% of babies born with congenital heart disease are now surviving into adulthood. What it also means, however, is that as these babies grow up, they need continued and careful monitoring as heart patients.

One such baby was Aletha, one of my blog readers in South Dakota, now 36 years of age. Her parents, she says, realized soon after she was born that their newborn daughter had a problem. Pediatric cardiologists diagnosed baby Aletha with a heart condition called Bicuspid Aortic Valve Disease (BAVD).  Continue reading