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Josiah

Josiah’s Story

Josiah was born in August 2022 with several CHDs, including HLHS (hypoplastic left heart syndrome), DORV, dextrocardia, and AS/AA. The night he was born, he went into cardiac arrest and was placed on emergency ECMO. After a couple of weeks of recovery, his surgeons attempted the first of three open-heart procedures to help correct the HLHS. Josiah’s heart was too unstable, and they were not able to complete the surgery. It was determined that Josiah would need a heart transplant. He was listed status 1A (the highest priority) on September 21st, 2022.

During our wait, our family relocated from our home in Wyoming to be closer to the hospital with our other two toddlers (ages 3 and 1). After waiting 311 days, Josiah finally received his hero heart. We were able to leave the hospital for the first time 363 days after Josiah’s birth. Since then, Josiah has had several other surprise diagnoses, including scoliosis, bilateral radial head dislocation, and Li-Fraumeni syndrome.

Josiah is a very happy, outgoing, stubborn little boy. He takes all challenges in stride and tries to keep up with his older siblings. We are so thankful to the amazing staff at Children’s Hospital Colorado for all they’ve done for our son and our family as a whole. We are especially grateful to Josiah’s donor and their family for choosing grace in their darkest moments and giving our baby a chance at life.

– As told by Josiah’s Mom