Heterotaxy Syndrome Awareness

Heterotaxy Syndrome

Heterotaxy Syndrome affects 1 in 10,000 babies and can cause any of the internal organs to be misplaced, malformed, multiplied or missing. There is no known cause, although certain genes have been implicated, and people with heterotaxy fall on an incredibly broad spectrum of severity, depending on which organs are affected; imagine throwing 100 possible birth defects into a hat and choosing 15.  That's heterotaxy.

Ethan will be three in July and was born with 9 heart defects, 5 spleens, 2 left lungs and a right-sided stomach. He had his first open heart surgery at 6 days old and has since had 3 more, plus another surgery to place a permanent pacemaker. When we first got his diagnosis, we turned to the internet and found an incredible group of families waiting with open arms to walk with us on this road. I've since joined the board of this organization, and we at Heterotaxy Connection work to connect families with resources and with each other as they face the constant curveballs of life with heterotaxy.

Ethan started life with the hope of only ever having half a heart, but thanks to an incredible team up in Boston, he just finished a series of surgeries to convert his two chambers to four, and now for the first time in his life he's enjoying what it feels like to have enough oxygen in his blood. He still relies on multiple medications to support his heart function, needs breathing treatments to help him clear mucus from his lungs, will always have a pacemaker, and will need more surgeries in the future as his heart grows, but right now he's just making up for lost time, playing and running and yelling that he's Superman.  We're pretty sure he's got that right.


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