Congenital Heart Defect Family Voices Collection

Mom and NICU nurse Cheryl Toole tells the story of her daughter Avery, who was born with hypoplastic left heart syndrome (HLHS). Avery made it through multiple heart surgeries and eventually a heart transplant, and is now a thriving college student.

College student Cookie Wang tells his own story of going into heart failure as a teenager, and undergoing a heart transplant.

Abby describes growing up with a congenital heart defect (CHD), her multiple surgeries, and her decision to give back as a cardiology nurse.

In these books and other resources, people living with congenital heart defects (CHDs) tell their own stories in their own words.

Joshua and his parents describe his childhood and adolescence with a congenital heart defect (CHD), including his transplant.

Avery and her family describe her experience with heart surgery to treat her congenital heart defect (CHD).

In this collection of books, websites, and podcasts, parents tell their stories of raising children wth congenital heart defects (CHDs) and other chronic childhood diseases.

Read the story of mom Jenna, who discovered when she was pregnant that her baby boy had a congenital heart defect (CHD). She received stress relief support through her pregnancy, and right up until adorable baby Quinn was born.

Lindsey is a vibrant young girl living--and thriving--with Williams Syndrome and a congenital heart defect (CHD). Read her story here.

Aidan's father describes some of the challenges Aidan faced growing up with a congenital heart defect (CHD), and how a well-timed neurodevelopmental evaluation set them on a better bath.

Cillian had a rough start in life, facing a complex congenital heart defect (CHD), multiple surgeries, and a brain injury. But through it all, Cillian and his family persevered, and recently celebrated his first birthday.

Katy is the mother of two boys with complex congenital heart defects (CHDs). In this series of videos, Katy and Dr. Betsy Blume discuss how they established a healthy family-provider relationship, and how they shared decision making in the face of advanced medical challenges.

After his heart transplant, Jeremiahs's family initiall struggled to find the right school for him. After working with their care team, Jeremiahs was finally able to attend a safe and appropriate school along with his peers.

After a series of surgeries were unable to restore adequate function to Jeremiahs's heart, he underwent a heart transplant. This is the story of his surgery and recovery.

Wesley has faced many medical and developmental challenges during his decade of life with a congenital heart defect (CHD). By always focusing on development and intervention, Wesley's family has helped him to continually move forward towards his goals.

In this video, multiple parents of kids with congenital heart defects (CHDs) give advice to other parents, sharing their wisdom and offering hope and inspiration.

When Presley was born, his doctors and parents did not yet know that he had a congenital heart defect (CHD).His parents tell the story of how he was diagnosed and successfully treated.

When Kyah went into heart failure as a teenager, she was able to go home with a ventricular assist device (VAD). This is her story.

When Elliott joined her family from China, her parents knew that she had a congenital heart defect (CHD) but they did not know her prognosis. They were determined to give her the best chance at health, and now Elliott is thriving alongside her older sisters.

Logan and Allie first met when they were babies, and both hospitalized with congenital heart defects (CHDs). Their families remained connected, and years later their kids went together to prom.

Emily and her parents describe her experience growing up wiht a congenital heart defect (CHD), including multiple heart surgeries and placement of a pacemaker. Emily is an accomplished student and athlete.

Lauren was born with heterotaxy syndrome and a congenital heart defect. Her mother was excited to hear she was a candidate for a biventricular repair, and she is now a spirited and healthy little girl.

Alex was born with heterotaxy syndrome and a complex heart defect. After a successful series of surgeries, he is now an active and vibrant little boy.

Atiana suffered a brain injury after a cardiac arrest. After months of hard work and rehabilitation, she made remarkable progress, and eventually became a nursing student in order to give back to the community that helped her.

Ethan's mother was determined to give him the best possible treatment for his heterotaxy syndrome and congenital heart defect (CHD). Ethan has done amazingly well.

Avery's parents learned that their little girl would require an open-heart surgery for her atrial septal defect. They knew that the surgery would be challenging for the whole family, and they found the support they needed to continue thriving.

Marcela and her family traveled from Guatemala so that she could receive the life-saving surgery that she needed for her congenital heart defect (CHD). Her mother tells her story.

Georgia was still a baby when her doctors determine that she required a heart transplant. Her family describes her journey, and we see Georgia as a bubbly and adorable toddler.