Congenital Heart Defects

Common Name(s)

Congenital Heart Defects, Congenital Heart Disease

Congenital Heart Disease (or Congenital Heart Defects) is one of the most common abnormalities found in newborn babies. Congenital Heart Disease, or CHD, is a problem with the structure of the heart that is present at birth and may present in a wide range - from very mild to critically life threatening in the first days of life. The defects generally cause disruptions in the normal blood flow or rhythm of the heart. Defects can be associated with the chambers or valves of the heart or the arteries or veins near the heart. Critical Congenital Heart Disease (CCHD) defines more severe forms of CHD that can lead to death soon after the baby is born. CCHD happens when a baby’s heart does not develop normally before birth. Although it is rare, affecting only 2-3 of every 10,000 babies born, CCHD can quickly lead to serious illness and even death in the first few days of life. Some babies with CCHD are discovered early in pregnancy by prenatal ultrasound, but many babies with CCHD are diagnosed after they are born. Unfortunately, many of these babies can appear perfectly normal until they become critically ill.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Congenital Heart Defects" for support, advocacy or research.

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Congenital Heart Information Network

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

Last Updated: 12 Oct 2013

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It's My Heart, Inc.

It's My Heart's mission is to provide support, spread awareness, educate and advocate for those affected by congenital heart defects by creating alliances with fellow families, hospitals, support groups, and the community.

Last Updated: 10 Jan 2013

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Kids with Heart National Association for Children's Heart Disorders

Our organization was formed in 1985 with the main mission of providing support, information, resources, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.

Last Updated: 30 Oct 2012

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Mended Hearts, Inc.

Our mission is dedicated to “Inspiring hope and improving the quality of life for heart patients and their families through ongoing peer-to-peer support”.

Last Updated: 11 Mar 2013

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Saving Little Hearts

Saving Little Hearts is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Care Packages.

Last Updated: 15 Mar 2013

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Congenital Heart Defects" for support, advocacy or research.

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Congenital Heart Information Network

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

http://tchin.org

Last Updated: 12 Oct 2013

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It's My Heart, Inc.

It's My Heart's mission is to provide support, spread awareness, educate and advocate for those affected by congenital heart defects by creating alliances with fellow families, hospitals, support groups, and the community.

http://www.itsmyheart.org

Last Updated: 10 Jan 2013

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Kids with Heart National Association for Children's Heart Disorders

Our organization was formed in 1985 with the main mission of providing support, information, resources, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.

http://www.kidswithheart.org

Last Updated: 30 Oct 2012

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Mended Hearts, Inc.

Our mission is dedicated to “Inspiring hope and improving the quality of life for heart patients and their families through ongoing peer-to-peer support”.

http://www.mendedhearts.org

Last Updated: 11 Mar 2013

View Details
Saving Little Hearts

Saving Little Hearts is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Care Packages.

http://www.savinglittlehearts.com

Last Updated: 15 Mar 2013

View Details

 

General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Congenital Heart Defects" returned 229 free, full-text research articles on human participants. First 3 results:

Screening for 22q11 deletion syndrome among patients with congenital heart defects.
 

Author(s): Rafael Fabiano Machado Rosa, Rosana Cardoso Manique Rosa, Patrícia Trevisan, Carla Graziadio, Marileila Varella-Garcia, Giorgio Adriano Paskulin, Paulo Ricardo Gazzola Zen

Journal: Sao Paulo Med J. 2014 ;132(2):125-6.

 

Last Updated: 9 Apr 2014

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Rare variants in NR2F2 cause congenital heart defects in humans.
 

Author(s): Saeed Al Turki, Ashok K Manickaraj, Catherine L Mercer, Sebastian S Gerety, Marc-Phillip Hitz, Sarah Lindsay, Lisa C A D'Alessandro, G Jawahar Swaminathan, Jamie Bentham, Anne-Karin Arndt, Jacoba Low, Jeroen Breckpot, Marc Gewillig, Bernard Thienpont, Hashim Abdul-Khaliq, Christine Harnack, Kirstin Hoff, Hans-Heiner Kramer, Stephan Schubert, Reiner Siebert, Okan Toka, Catherine Cosgrove, Hugh Watkins, Anneke M Lucassen, Ita M O'Kelly, Anthony P Salmon, Frances A Bu'lock, Javier Granados-Riveron, Kerry Setchfield, Chris Thornborough, J David Brook, Barbara Mulder, Sabine Klaassen, Shoumo Bhattacharya, Koen Devriendt, David F Fitzpatrick, , David I Wilson, Seema Mital, Matthew E Hurles

Journal: Am. J. Hum. Genet.. 2014 Apr;94(4):574-85.

 

Congenital heart defects (CHDs) are the most common birth defect worldwide and are a leading cause of neonatal mortality. Nonsyndromic atrioventricular septal defects (AVSDs) are an important subtype of CHDs for which the genetic architecture is poorly understood. We performed exome ...

Last Updated: 7 Apr 2014

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Patient-reported quality of life outcomes for children with serious congenital heart defects.
 

Author(s): Rachel L Knowles, Thomas Day, Angie Wade, Catherine Bull, Christopher Wren, Carol Dezateux,

Journal: Arch. Dis. Child.. 2014 May;99(5):413-9.

 

To compare patient-reported, health-related quality of life (QoL) for children with serious congenital heart defects (CHDs) and unaffected classmates and to investigate the demographic and clinical factors influencing QoL.

Last Updated: 10 Apr 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Congenital Heart Defects" returned 31 free, full-text review articles on human participants. First 3 results:

Folate deficiency and folic acid supplementation: the prevention of neural-tube defects and congenital heart defects.
 

Author(s): Andrew E Czeizel, Istvan Dudás, Attila Vereczkey, Ferenc Bánhidy

Journal:

 

Diet, particularly vitamin deficiency, is associated with the risk of birth defects. The aim of this review paper is to show the characteristics of common and severe neural-tube defects together with congenital heart defects (CHD) as vitamin deficiencies play a role in their origin. ...

Last Updated: 28 Nov 2013

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Congenital heart defects and extracardiac malformations.
 

Author(s): Rosana Cardoso M Rosa, Rafael Fabiano M Rosa, Paulo Ricardo G Zen, Giorgio Adriano Paskulin

Journal: Rev Paul Pediatr. 2013 Jun;31(2):243-51.

 

To review the association between congenital heart defects and extracardiac malformations.

Last Updated: 5 Jul 2013

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Nuchal translucency and major congenital heart defects in fetuses with normal karyotype: a meta-analysis.
 

Author(s): A Sotiriadis, S Papatheodorou, M Eleftheriades, G Makrydimas

Journal: Ultrasound Obstet Gynecol. 2013 Oct;42(4):383-9.

 

To pool published data regarding the sensitivity and specificity of nuchal translucency (NT) in the diagnosis of major congenital heart defects (CHDs) in fetuses with normal karyotype.

Last Updated: 30 Sep 2013

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Symptoms, Diagnosis, and Treatment

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Molecular Basis of Congenital Heart Defects
 

Status: Recruiting

Condition Summary: Congenital Heart Defects

 

Last Updated: 5 Nov 2010

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Interval Training in Adults With Congenital Heart Disease a Randomized Trial
 

Status: Recruiting

Condition Summary: Congenital Heart Defects

 

Last Updated: 2 May 2013

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An Evaluation of Routine Developmental Follow-Up in Infants and Children With Congenital Heart Disease
 

Status: Recruiting

Condition Summary: Congenital Heart Defects

 

Last Updated: 27 Oct 2014

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