Congenital Heart Defects Personal Stories

Updated:Aug 30,2016

These touching stories from parents and survivors living with congenital heart defects are filled with inspiration. Many of them are sharing their stories to reach out to the community. They share their journey to champion hope.

personal stories

Brycen: CHD Heart Warrior - Part 1

Brycen: CHD Heart Warrior - Part 2

Tatum Henderson

Tatum Henderson: Heart problems discovered in the womb

At their 20-week ultrasound, Jamie and Cale Henderson were excited to learn they would be welcoming a baby girl. The other news that day wasn’t as joyous. Their unborn daughter had several problems with her heart. Doctors didn’t yet know the full extent of her condition.

Brycen Principe

Brycen Principe: Very sick in his first few hours of life

When Brycen was born, a simple pulse-oximeter test was not required by his state. Fortunately, a nurse noticed his blue lips and administered the pulse-ox test. These days, surgery scars are the only clue of Brycen's heart defect.

Bret and Amy Baier with baby Paul

Paul Baier: First heart surgery at 12 days old

Bret and Amy Baier greeted their first baby with the excitement of any new parents, staring in awe at 10 perfect fingers and 10 perfect toes. Less than two days later, they stood silently as doctors detailed the numerous potentially fatal things that were wrong with little Paul’s heart.

Keyota and Faith Cole

Keyota and Faith Cole: Mother daughter duo battle rare forms of heart disease

Keyota shares her emotional journey of her own struggles with heart disease, and that of her young daughter. “I want to try to give back to other women, to let them know: Giving up is not the option,” she said. “Just don’t give up.”

Kristine and Cora

Kristine Brite-McCormick: Using her devastation as motivation

No parent should learn from the coroner that their baby was born with a heart defect. Now Kristine is on a mission to encourage states to require that all newborns get a simple screening.

Anna Triffo

Anna Triffo: Loves giving hope to others

Due to several issues present at birth, Anna relies on the left side of her heart to power her body. "It makes me special." Read Anna's story.

Katherine Schroeder

‘Courageous Katherine’ thrives on helping fellow heart patients

In her 13 years, Katherine Schroeder has undergone 15 surgeries or other procedures on her heart. And she still faces a lifetime of medical interventions to keep her heart running. Her journey began when she was 3 weeks old.

The Hurst Family

The Hurst Family: Faced heart-defect diagnosis before birth — again

Greta Hurst lost her first baby to a heart defect, and became pregnant again. A routine ultrasound revealed that this baby boy also had a defect. They named their baby boy Bronson, and two days later endured his first open-heart surgery. Read their story.

Blake Galligan and his mom

Blake Galligan: A Heart Warrior at age 4

By looking at him, you'd never know active 4-year-old, Blake Galligan, has a congenital heart defect. At one day old, Blake was diagnosed with hypoplastic left heart syndrome. His mom shares their story — one of hope and perseverance.

Genetic researcher Deepak Srivastava

Deepak Srivastava: Changing lives through research

Genetic researcher Deepak Srivastava is hoping his major defining moment will come soon. Find out why.