Like many babies born with transposition of the great arteries, Amelia was born blue. Her blood was not circulating to her entire body because the two main arteries leading blood away from her heart were switched, sending blood in the wrong direction. She was immediately helicoptered to a larger hospital to undergo surgery to restore blood flow. Over 30 years later, Amelia is still managing the side effects of her congenital birth defect.
On this episode of the Major Pain podcast, Amelia discusses living with transposition of the great arteries. In 1988 the prevailing corrective surgery was called a Mustard procedure, which restores oxygenated blood to the whole body. Babies born today will have a different procedure that switches the great arteries to flow normally. That makes Amelia’s heart exceptionally rare, since there aren’t many patients her age who underwent a Mustard procedure. In high school her doctors wanted to perform the switch surgery, and put a band on Amelia’s heart to strengthen it in preparation. Unfortunately, this band caused more harm than good, eventually calcifying and limiting her blood flow before it was removed 15 years later without having the switch surgery done.
During the years when Amelia’s blood flow was limited she was constantly exhausted and her hands were often blue, but her doctors brushed off her complaints as normal for someone with a congenital heart defect. This added to the compounding medical trauma of her many surgeries (including three open heart procedures), eventually leading to a diagnosis of complex post-traumatic stress disorder (CPTSD). As an adult, Amelia was also diagnosed with autism, endometriosis and obsessive-compulsive disorder (OCD). Finally receiving these diagnoses has been deeply affirming, opening the door to better Amelia’s understanding of self.
Listen to Amelia’s amazing story on this podcast episode! You can connect with her online at https://lnk.bio/Ameliablackwater
Our host Jesse and his longtime partner Andi just got engaged! They tell the story on this month’s bonus episode over on Patreon. Head to https://www.patreon.com/majorpainpodcast to gain access to the bonus podcast when you subscribe to support the creation of Major Pain.
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