Navigating and advocating for your child born with or affected by pediatric heart disease is not easy, nor is finding resources as an adult CHD warrior. Stay informed with reputable resources that match your journey.
Looking for support on your congenital heart disease (CHD) care journey?
Riley was born with tetralogy of Fallot with pulmonary stenosis and complete heart block. He underwent his first open heart surgery at just two months old to repair his heart and a few weeks later had a cardiac pacemaker placed. Since then he has had his pacemaker replaced twice, once after coding in the hospital, and will need additional replacements as he grows.
Riley is happy and healthy living at home with his amazing grandmother, Tracy, and enjoys playing catch, singing and working on PT and OT with Missouri First Steps.
Stella was born with hypoplastic left heart syndrome (HLHS) in December 2015 – a CHD that meant she would only have half a working heart and need a series of three surgeries to reconstruct her heart’s anatomy. She underwent her first open heart surgery when she was only two days old, and then additional surgeries at four months old and three years old. Thankfully her gifted surgeons were able to create a stable heart for Stella and she has been the light of her family’s life ever since!
Today Stella is a spunky and smiley five year old that brightens the day of everyone she meets.
Evie was born at twenty weeks with hypoplastic right heart syndrome. Her surgeons had planned a series of three surgeries to repair her heart, but unfortunately at birth they discovered her coronaries were missing or abnormal. At one week old, Evie was listed for a heart transplant. While waiting for her hero heart, she was placed on ECMO. At eight weeks old she was blessed with a second chance at life and received a heart transplant!
After eighty-two days inpatient, Evie went home for the first time where her parents are able to enjoy their happy and healthy baby girl.
Emmalyn is a year and a half old and was born with Transposition of the Great Arteries (TGA). She had her first surgery at four days old and then again at nine days old. She has since had two angioplasties.
Emmalyn is healthy and thriving. She loves to eat fruit of all kinds, play with all of her animals, play in water, and be outside!
Calvin was diagnosed with a congenital heart defect at fifteen months after the pediatrician noticed a heart murmur, along with other chronic respiratory issues. Calvin has undergone two open heart surgeies in order to re-establish correct blood flow and repair his CHD.
Although Calvin’s CHD will always require specialized care, he is now a happy and thriving four and a half year old. He loves to play golf, play outside, drive his gator and anything to do with trucks, tractors, trains or airplanes.
Allyson is a five year old Heart Warrior. She was diagnosed with a single ventricle heart, heterotaxy syndrome, Noonan’s Syndrome and has survived multiple heart surgeries and a long list of complications over her little life.
Allyson is a preschooler and is so excited to go to kindergarten next year! She has three older siblings who mean the world to her. Allyson is extremely adventurous and her favorite thing to do is go to Target.
This girl is so full of spunk and fight and she is changing the world around her with her story.
Meet Ari, our spunky vivacious 5-year-old heart warrior, Miss America contestant, and Latoya heart mom extraordinaire. Miss Bey was diagnosed with complex single ventricle heart disease early in her mom’s pregnancy.
Their story has also been complicated by congenital heart disease and cancer. Latoya was diagnosed with breast cancer and underwent treatment before Ari’s birth.
Ari had her first open heart surgery at one week of age and her second at 6 months old. This dynamic mother-daughter duo are the real heroes.
Meet Diego, a 14-year-old heart warrior with Hypoplastic Left Heart Syndrome. He has endured multiple surgeries that rerouted his blood flow to maximize his heart’s function. These procedures have been so effective that he has been cleared to play sports and leads a life without constraints.
Diego is an active teen who loves flag football, video games, dad jokes, and walking his dog. His laugh is infectious and always brings an energy and joy that lights up any room. He is the oldest of two brothers, and despite the typical sibling rivalry, he enjoys hanging out with his younger brother and playing video games.