"Saving Jackson:" The incredible online network of heart moms and cardiac kids

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This week's cover story, "Saving Jackson," follows the staggering array of medical challenges faced in his first year of life by Jackson Holbrook, a baby born with a serious heart defect. It's a journey most families will never have to contemplate, but one that's more common than you might think: Congenital heart defects are the leading cause of mortality in infants. Yet the survival rate for cardiac kids has improved dramatically in recent years, thanks to a combination of medical innovation and pro-active parents like Jackson's mom and dad.

Chris and Traci Holbrook knew almost nothing about heart defects when they learned, 22 weeks into Traci's pregnancy, that Jackson has a rare condition known as double outlet right ventricle, in which both of the main arteries of the heart connect to the same chamber, impeding efficient delivery of blood and oxygen to the rest of the body. The couple soon found ways to educate themselves about the condition and its treatment, which typically involves a series of complex and costly open-heart surgeries; there's a wealth of information about congenital heart defects available from the Children's Heart Foundation and the major pediatric cardiology centers, such as Boston Children's Hospital, Children's Hospital of Philadelphia and the Heart Institute at Children's Hospital Colorado.

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Stacey Lihn.
But the Holbrooks also discovered another valuable resource: an informal but impressive global network of "heart moms," who've put together support groups, websites, blogs and social media sites to help guide bewildered and often despairing parents through the wilderness. The content ranges from practical advice about how to find the right surgical team (courtesy of the blog by Stacey Lihn, who's also the president of the heart-mom group Sisters by Heart) to heartfelt reflections on what it means to have a child who's said to be living on "borrowed time."

Other blogs contain detailed accounts of operations (sometimes with eye-opening photos), discussions of what meds and therapies seem to be helping, pix of kids heading off to school or playing sports after the necessary repairs. Some just abruptly stop after a few months, possibly because the outcome was tragic. Occasionally, though, even the most dreaded news gets shared -- like this post about a baby who went from birth to immediate surgery and didn't survive.

Inspirational or grieving, chatty or solemn, angry or religious, the blogs by other moms gave Traci Holbrook a way to confront her own hopes and fears and have a better idea of what to expect from the barrage of surgeries. They also encouraged her to chronicle Jackson's own progress, in a stream of e-mails to family and supporters -- a powerful account of the ups and downs of a cardiac kid's first months of life. Excerpts from those e-mails appear in this week's feature -- and may help launch some more sharing of news, laughter and tears among this emerging virtual community.

Read more about Jackson in "Changing the odds for Colorado's cardiac kids."

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