Episode 20 | Alex’s Story – A daughter born with congenital heart defects and heterotaxy

Episode 20 | Alex’s Story – A daughter born with congenital heart defects and heterotaxy

Podcast Show Notes

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.

Check out this episode!

You Might Also Like…

When Your Baby is Diagnosed with Type 1 Diabetes: Marlee’s Story

“My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live.” In this episode, TikTok Influencer and Medical Mom Marlee Brandon, a pediatric speech-language pathologist turned full-time mom, shares the...

Comfort positions

Download the Comfort Positioning Guide

 

 

Being close to a trusted adult is powerful. It lessens pain and brings comfort when kids need it most. This guide shows you how to keep kids safe, and help them feel supported, during medical procedures. From the Meg Foundation for Pain and Child Life On Call.

Your download is heading to your inbox now!

Pin It on Pinterest

Share This