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“Don’t be afraid”: Incredible young man survives ectopia cordis

August 13, 2009

How many ways do I love this story? Too many. I love it for the sake of a mom who wrote in desperate for stories about survivors. Her baby boy had been prenatally diagnosed with ectopia cordis, that is, with his heart beating outside his tiny body. Universally fatal, she was told. 

“Usually” fatal would have offered her that tiny strand of hope. To be fair to MD’s, often there are additional defects – sometimes the syndrome pentalogy of cantrell, which will diminish the already small  chances of survival. But sometimes it’s just a lone fluke. In some of  those cases,  there are survivors, such as little Naseem, and more recently a baby boy in China  who made international news.  Christopher Wall, featured in the video story below, is the oldest living survivor of this condition. wall

His life has not been easy. He spent his first 3 1/2 years of life in a Children’s Hospital – literally. There were numerous surgeries – and the very surgeries that saved his life also contributed to the development of his disabilities. Some may wonder if it was worth it – but even the reporter felt compelled to comment on Christopher’s joie de vivre. His mother answers – “He likes being here, he likes being alive.”

See the 20/20 video: Boy With Heart Outside Body Triumphs


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