Real Stories: Living with Heart Defects

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Read stories about people affected by heart defects

Collage of people with heart defects

Living with Coarctation of the Aorta

Coarctation of the aorta is a birth defect in which a part of the aorta is narrower than usual. To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with coarctation of the aorta.

Nicholas’ Story
Nick as a baby and playing soccer

Nicholas was born with a critical congenital heart defect (critical CHD) called coarctation of the aorta.

Shandler’s Story
Nick as a baby and playing soccer

Shandler was born with a critical congenital heart defect (CCHD).

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Living with Hypoplastic Left Heart Syndrome

Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with hypoplastic left heart syndrome.

Ta’Ziyah
Ta’Ziyah at the hospital

Ta’Ziyah was born with hypoplastic left heart syndrome (HLHS).

Nick’s Story
Nick at a swimming pool and Nick older

Nick was born with a congenital heart defect (CHD) that required multiple surgeries and eventually a heart transplant.

Ryan’s Story
Ryan in the hospital and with his mom and brother

Laura shares the story of her son, Ryan, who was born with a critical congenital heart defect (critical CHD).

Teagan’s Story
Teagan holding a picutre of himself in the hospital

Teagan was born with a critical congenital heart defect (CCHD).

Caden’s Story
Caden in the hospital

A birth defect diagnosis during pregnancy can challenge any family. Dawn’s son, Caden, was diagnosed with a heart defect during her pregnancy.

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Living with Tetralogy of Fallot

Tetralogy of Fallot is a birth defect that affects normal blood flow through the heart. It is made up of four defects of the heart and its blood vessels. To learn what it’s like to live with this condition or how families are affected, read these real stories from people living with Tetralogy of Fallot.

Asha’s Story
Asha

Asha was born with a critical congenital heart defect (critical CHD), during a time when open heart surgeries in India were unheard of.

Ken’s Story
Ken

Ken was born with a critical congenital heart defect that required surgery while he was still a baby.

William’s Story
William as a child with his mother

William was born with a critical congenital heart defect (critical CHD), during a time when children born with critical CHDs typically died before their first birthday.

Luke’s Story
Luke

Luke’s journey with tetralogy of Fallot reminds us that each child’s journey with a birth defect is unique.

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Living with Other Types of Congenital Heart Defects

Congenital heart defects (CHDs) are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. To learn what it’s like to live with these types of conditions or how families are affected, read these real stories from people living with congenital heart defects.

Mary’s Story
Mary

Mary was born with multiple congenital heart defects. As a Doctor of Nursing Practice, she wants to empower her patients to take an active role in their health.

Piper’s Story
Piper in the hospital

David’s daughter, Piper, was diagnosed with a congenital heart defect (CHD) shortly after she was born.

Hannah’s Story
Hannah

Hannah was born with several critical congenital heart defects. Hannah’s family is forever grateful for the three weeks they were able to spend with her before she passed.

Isabella’s Story
Isabella

Isabella was born with a congenital heart defect. When her mother, Melissa, first learned of Isabella’s heart defect during pregnancy, she was devastated.

Catherine’s Story
Catherine as an infant in the hospital

Catherine was born with pulmonary atresia, but her heart defect never stopped her from reaching her goals in life.

Missy’s Story
Missy

Missy was born with a CHD. Learn how her commitment to lifelong care for her CHD has helped her live a healthy life.

Jefferson’s Story
Jefferson as a baby in the hospital

Jefferson was born with a congenital heart defect called “transposition of the great arteries.”

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Page last reviewed: October 12, 2021
Content source:  National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention