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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Apr 23, 2018

At Alex's 20-week ultrasound appointment, she and her husband learned that their daughter, Lucy, had heterotaxy and congenital heart defects. From that moment, their lives changed and they became advocates and fighters for their spunky daughter who is now one year old.

In this episode, Alex talks about Lucy's birth, surgeries, hospitalizations and ER visits. She talks about how their cardiologist became one of their biggest champions and what a difference the congenital heart defect online community has made for them. 

Alex recommends the poem Welcome to Holland and the Mended Hearts organization for parents going through similar situations. If you'd like to connect personally with Alex, you can do so on Instagram or Facebook

Alex would like to share Lucy's diagnoses:

Heterotaxy: right sided stomach, midline liver and gallbladder, mirror lungs, asplenia.
Congenital heart defects: complex Single ventricle with: complete unbalanced AV canal defect, hypoplastic left heart, double outlet right ventricle, total anamoulous pulmonary venous connection, pulmonary atresia, and bilateral superior vena cava.