Born For This Stories

Susie & Zane (Part 1): A Mother's Fight Through Hypoplastic Left Heart Syndrome


Listen Later

Some parents walk into a diagnosis. Others are thrown into it without warning.

In this powerful two-part story, Johanna and Peter sit down with Susie, mom of three and mother to Zane — her brave "heart warrior" born with hypoplastic left heart syndrome (HLHS). Part 1 walks listeners through the moment everything changed: an unsettling 18-week ultrasound, a devastating phone call during their gender reveal, and the first terrifying weeks inside the walls of Boston Children's Hospital.

Susie shares what it was like to navigate pregnancy in the height of the pandemic, advocate alone for her son, and fight through the fear of hearing, "he has the worst heart defect a child can have… and he's probably not going to make it."

Her voice brings forward a truth so many heart families hold: you can't see all disabilities, and you can't see the strength it takes to keep showing up.

This is Part 1 of an extraordinary journey that continues next week.

In this episode:
  • The blended family that became the foundation of Zane's fight

  • The ultrasound that "didn't look right" and the 45-minute wait that changed everything

  • The moment a doctor said Zane had "the worst defect… and he's probably not going to make it."

  • Navigating pregnancy alone because of COVID restrictions

  • Choosing hope when others pushed for termination

  • The first time hearing the words "hypoplastic left heart syndrome."

  • Emergency cath procedures, intubation, and a 14-hour open-heart surgery at two days old

  • The trauma of watching a newborn re-intubated repeatedly

  • The moment a nurse said, "I'm pretty sure Zane's having a seizure," leading to the discovery of his stroke

✨ Part 2 Releases Next Week

The story continues as Susie walks through multiple surgeries, months-long hospital stays, feeding challenges, advocacy battles, and the unexpected miracles that shaped Zane's life.

👣 Share your story at bornforthestories.com 💛 Follow us on Instagram @bornforthestories 🙏 Subscribe, rate, and share this episode to support more families

...more
View all episodesView all episodes
Download on the App Store

Born For This StoriesBy Dr. Johanna & Peter Hartley