Congenital Heart Disease

I find hope in the darkest of days, and focus in the brightest. I do not judge the universe - Dalai Lama

Congenital Heart Disease

image by: Children's Health

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Why Fighting Congenital Heart Disease Matters

Congenital heart disease. Heart conditions. Heart defects. You may have heard of these words. These words are curse words to any pregnant mom. These are empty words for those who can turn a blind eye, but they are loaded words to anyone who has been there— any caregiver who has heard those words spoken about their child or their loved one.

Those who know… Those who have been there… Those who have loved someone that was touched by congenital heart disease know that there is a whole other world existing within this big one— the “heart” world. It’s a world full of conditions and arrhythmias and pressures and loaded terms like “stenosis” that can knock the wind out of any parent.

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 Why Fighting Congenital Heart Disease Matters

Congenital heart disease. Heart conditions. Heart defects. You may have heard of these words. These words are curse words to any pregnant mom. These are empty words for those who can turn a blind eye, but they are loaded words to anyone who has been there— any caregiver who has heard those words spoken about their child or their loved one.

Top 10 Reasons to Date a Congenital Heart Defect Survivor

We exchanged the horrible things people have said to us and although we do not want those people in our lives anyway, that doesn’t take the pain away. However, with our bright and relentless spirits, we keep fighting, smiling, living, and searching for what’s next. Whatever is around the corner, bring it on! After talking with many CHDers about love, I decided we need a list of positive reasons of why we are so incredibly awesome.

Congenital Heart Defect Information

Whether you are looking for definitions of medical terms, hospitals caring for people with CHDs, other people with whom you can network and share experiences, links to support groups, articles regarding CHDs, or resources for the CHD community, you have come to the right place!

Congenital Heart Defects Simplified

Comprehensive, easy-to-understand descriptions (without confusing medical jargon) of the 30 most common heart defects.

Congenital Heart Disease

Congenital Heart Disease: Clinical Studies from Fetus to Adulthood is a new, clinical journal focusing on congenital heart disease in children and adults. Though the number of infants born with heart disease each year is relatively small (approximately 1% of the population), advances in the treatment of such malformations have led to increased life spans for this population.

Congenital Heart Information Network

C.H.I.N. is a national organization that provides reliable information, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.

Congenital Heart Surgeons' Society Data Center

We take pride in our research and it would not be possible without the annual participation of the patients and families enrolled in our studies. We would love for you to be part of our team so please join our community.

Heart and Coeur

A listing of Congenital Heart Disease Forums.

Heartpedia App

Congenital heart defects can be difficult to visualize and explain. Heartpedia, created by Cincinnati Children's Hospital, allows you to interact with 3D models of pediatric heart anomalies and defects. Healthcare providers may use these anatomically-correct models as visual learning tools to help educate patients and families on specific defects and repairs.

Hypoplastic Left Heart Syndrome

Welcome to the HLHS Parent information page. This site was designed by parents of a child with HLHS to help other parents receiving the prenatal diagnosis of Hypoplastic Left Heart Syndrome.

International Society for Adult Congenital Cardiac Disease

The purpose of the International Society for Adult Congenital Cardiac Disease is to promote, maintain and pursue excellence in the care of adults with congenital cardiac disease. The Society is dedicated to the advancement of knowledge and training in medical disciplines pertinent to congenital heart disease in adults.


Scientific Software Solutions Inc. is the only company in the world that has an exclusive focus on software for congenital heart disease. Since 1981, one year prior to the release of the IBM PC, we have developed quality software products for both clinical and educational purposes and have compiled a record of success in computer program design for congenital heart disease.

Adult Congenital Heart Association

The Adult Congenital Heart Association is a nonprofit organization which seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families, and the medical community.

Canadian Adult Congenital Heart Network

The CACH Network was created to pool the knowledge and experience of congenital heart disease professionals in Canada to help strengthen their skills and knowledge of the discipline, and to create a community of individuals committed to caring for adults with congenital heart disease-and their families.

Canadian Congenital Heart Alliance

The Canadian Congenital Heart Alliance is a volunteer-run registered charitable organization made up of patients with a congenital heart defect, their friends, families, and the medical community. With your support, we aim to improve the quality of care for these patients, many of whom require lifelong expert care.

Children's Heart Federation UK

The Children`s Heart Federation is dedicated to helping children with congenital or acquired heart disease and their families in the UK and Ireland. We are a parent-led charity consisting of 22 organisations, all of which are registered charities whose main aim is the support of families of children with heart conditions.

Children's Heart Institute

Our main goal is to provide useful and reliable educational information to parents, patients, nurses, and health care professionals. Simplifying science and patient education is my passion, and I consider it an integral element of patient care. Parents need to be well informed to understand their child’s condition, as this will alleviate anxieties and enable parents to be more comfortable with their child’s care options.

Cove Point Foundation

Welcome! to the world's largest information resource for pediatric and adult congenital heart disease!

Dr. Mani Children Heart Foundation

The Dr. Mani Children Heart Foundation is a non-profit entity created to raise awareness about Congenital Heart Defects and to raise funds to sponsor life-saving heart surgery for children from poor families suffering from congenital heart disease.

Fetal Cardiology UK

The aim of this site is to provide information about prenatal detection of heart defects as well as relevant information about support groups and diagrams of some of the commoner heart conditions.


HeartGift's purpose is to provide the necessary surgery including funds, coordination of care, and medical services for children with Congenital Heart Disease (CHD) living in countries where specialized medical treatments is scare or nonexistent.

HeartLine Families

We are a voluntary organisation set up to offer help and support to children with heart disorders and their families regardless of how slight or severe the condition may be.


HeartPoint is primarily designed for people interested in heart disease in adults. Since we've come on line however, it's become apparent that there is also a great deal of interest in congenital heart disease, disorders that generally affect children. It is a vast topic, and one that is difficult to generalize about.

Hearts Unite the Globe

We are Hearts Unite the Globe which is a nonprofit organization designed to help bring members of the CHD community together to learn, teach each other and support each other.

Jamie's Heart Foundation

The priority of Jamie's Heart Foundation is to assist families who are battling childhood heart disease. The foundation supports and networks with other community organizations that provide direct family support and services to children diagnosed with a congenital heart disease and their families. Jamie's Heart Foundation directly provides assistance to these families and their children.

Kids With Heart

Kids With Heart, while focusing on supporting families who have to contend with heart defects, also actively pursues awareness of the group and of congenital heart defects in general. In this endeavor, we provide an awareness store, opportunities to volunteer or donate, and more information and background on the group itself, including direct contact information.

Little Hearts

Little Hearts, Inc. is a non-profit organization. We provide support, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.

Mended Hearts

Mended Hearts is a national and community-based non-profit organization that has been offering the gift of hope to heart disease patients, their families and caregivers. To offer this hope Mended Hearts provides a variety of programs.


CRY’s myheart network provides personalised help, support, and information to individuals who have been diagnosed with a potentially life-threatening inherited or congenital cardiac condition. myheart is a support system for individuals to help develop effective coping strategies and reduce social isolation.

One in 1 Hundred

Living, loving and learning more every day from our child with a congenital heart defect (CHD). We share our stories here in hopes that they will help you along your own journey. CHD Blog, TGA, ASD, VSD, Pulmonary stenosis,COARC,artery stretching surgery. Kristen Tragethon.

Schneeweiss Adult Congenital Heart Center

The success of cardiac surgery in childhood has produced a large population of adults with congenital heart disease. These adults present a unique challenge for the cardiology community. With more than 30 different forms of congenital heart disease, it can be difficult for adult patients to find cardiologists familiar with their particular anatomy and problems. At the Columbia University Medical Center, highly specialized care of adults with congenital heart disease has been a long-standing tradition.

The Blalock-Taussig-Thomas Pediatric and Congenital Heart Center

Congenital heart disease is a somewhat common condition that can affect almost 1 in every 100 newborns in the United States. At the Johns Hopkins Heart and Vascular Institute, our cardiologists, cardiac surgeons and pediatric cardiovascular specialists are trained to diagnose and treat congenital heart disease using cutting-edge diagnostic and surgical techniques.

The Children's Heart Foundation

The goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. We accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

The Fetal Treatment Center

Our long experience with prenatal diagnosis and planning for optimum care allows us to offer the highest quality treatment whether intervention is indicated before or after birth.

The Somerville Foundation

The Somerville Foundation focuses on those born with a heart condition (congenital), providing practical and emotional support, and enabling them to take control of their lives and manage their own heart condition. Thanks to advancements in medical treatment, today more and more people born with heart conditions are living long, full and happy lives.

Tiny Tickers

We believe that it is important to improve the detection of heart disease before birth, at the routine "20-week" ultrasound scan. Early detection of heart disease means that babies and their mothers can be referred to specialists for care and treatment.

American Heart Association

Learn about problems that may accompany congenital heart defects and how this can impact a person's future.

British Heart Foundation

In the 1950s around eight out of ten babies with a complex congenital heart condition died before their first birthday. Today, thanks to advances in treatment and care, more than eight out of ten babies with congenital heart disease grow up to be adults.

Cincinnati Children's

Most children are born with a normal, healthy heart. In some cases, though, children are born with defects or abnormalities. The Cincinnati Children's Hospital Medical Center Heart Institute Encyclopedia provides detailed information on the following congenital heart defects, including, signs and symptoms, diagnoses and treatment options:


It can be frightening to learn that your child has a congenital heart defect (one that's present at birth). But congenital heart disease is a relatively common condition that affects almost 1 in every 100 newborns in the United States. Medical knowledge, technology, and experience can offer accurate diagnosis and treatments that allow nearly every form of congenital heart disease to be treated.

Lucile Packard Children's Hospital at Stanford

Eight out of every 1,000 babies born in the United States have a congenital (present at birth) heart defect - a problem that occurred as the baby's heart was developing during pregnancy, before the baby is born. Congenital heart defects are the most common birth defects.


Congenital heart defects are the most common type of birth defect, affecting 8 of every 1,000 newborns. Each year, more than 35,000 babies in the United States are born with congenital heart defects. Most of these defects are simple conditions that are easily fixed or need no treatment.


Many congenital heart defects cause few or no signs and symptoms. They are often not diagnosed until children are older. Many children with congenital heart defects don't need treatment, but others do. Treatment can include medicines, catheter procedures, surgery, and heart transplants. The treatment depends on the type of the defect, how it is, and a child's age, size, and general health.

Texas Children's Hospital

Plain radiographs of congenital heart disease.

Texas Heart Institute

Congenital heart defects are heart problems present at birth. They happen when the heart does not develop normally before birth. About 1% of infants are born with one or more heart or circulatory problems.

UCSF Benioff Children's Hospital

Congenital heart disorders are those that are present at birth. These conditions may be inherited, may occur from a parent's exposure to a harmful substance or disease or may develop for no apparent reason. Some congenital defects are diagnosed before a child is born, others go unnoticed until a child is older and many may not produce symptoms until adulthood or even old age.

10 Things You Need to Know About Congenital Heart Disease

If you asked me a year ago what I knew of congenital heart disease, I’d be able to tell you a couple of vague details involving an explanation on birth defects and how I knew someone whose kid had open heart surgery when he was three to repair a hole in his heart. I’d tell you how I just saw him, running around and playing, the picture of perfect health. I would have told you that, and while some of it is correct, I would have been largely mistaken about the prevalence, the severity of diagnoses, and the problem which congenital heart disease is.

5 Common Childhood Heart Defects Every Parent Should Know About

Structural malformations of the heart or blood vessels can give rise to congenital heart disease. Once considered beyond the purview of modern medical science, recent advances in research have made it possible to diagnose and treat congenital heart disease through surgery and heart catheterization. In this guide, we spotlight 5 common conditions and their corresponding treatments, to help you learn how pediatric heart defects can be addressed, corrected, and managed.

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