Congenital Heart Defects Personal Stories

Updated:Sep 2,2014
personal stories

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. 


Brycen: CHD Heart Warrior - Part 1Brycen: CHD Heart Warrior - Part 2

 Brycen PrincipeBrycen 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 PaulPaul 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 ColeKeyota 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 CoraKristine 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 TriffoAnna 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 FamilyThe 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 momBlake 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 SrivastavaDeepak Srivastava: Changing lives through research
Genetic researcher Deepak Srivastava is hoping his major defining moment will come soon.
Find out why.



Find and Give Support

Visit our Support Network today

When faced with challenges recovering after heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey. 

Web Booklets on Congenital Heart Defects

blue papersThese online publications describe many defects and the procedures used to repair them. It’s organized so that you can print out the sections that relate to you or your child’s defect and concerns.