Elianna

A Heterotaxy Syndrome Warrior

Elianna was born with heterotaxy syndrome, a rare condition that causes the internal organs to be deformed, missing, and/or misplaced. Most of Ellie’s internal organs are affected, though most profoundly, her heart. She has a heart defect called congenitally corrected transposition of the great arteries (CCTGA). She was born hypoxic and was placed on ECMO immediately. She was able to come off ECMO, though she did suffer catastrophic brain bleeding. We were told she may never wake up, and if she did, she would have no quality of life. We put our faith in Ellie and in God, and she has surpassed all of their expectations.

Unfortunately, her heart was just too malformed and weak, and she went into heart failure. At 3 months old, she was placed on BiVADs — two Berlin Hearts. She had a machine pumping for her for over a year while we waited for transplant. It was a long, hard year in the hospital, and Ellie did suffer a stroke while we waited. But in November 2024, our prayers were answered, and she received a perfect new heart!!

Elianna’s life and body, while scarred by everything, is truly a blessing to our family, and we couldn’t imagine life without this sweet little girl.