Critical congenital heart disease

Common Name(s)

Critical congenital heart disease, Congenital heart defects

Critical congenital heart diseases (CCHD) are a group of severe forms of congenital heart defects (CHD). 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 death in the first few days of life. Sometimes, CCHD may be found early in pregnancy by a special ultrasound, but many babies are diagnosed after they are born. Symptoms may include being very sleepy, poor feeding, pounding heart, weak pulse and bluish skin color. However, many babies appear healthy until they become critically ill.

CCHD may be genetic or environmental. If the cause is genetic, it may be due to a mutation (change) to a gene or genes that affect how the heart is formed. Changes in the gene(s) mean one or more proteins needed for the heart to develop will be missing or not working correctly. CCHD may sometimes be part of a syndrome with other birth defects. Environmental causes of CCHD include an infection during the pregnancy or certain medication taken by the mother during pregnancy.

A newborn baby can be tested for CCHD using pulse oximetry. This kind of test measures the level of oxygen in a baby’s blood, which helps determine how well the heart is functioning. CCHD will be confirmed by special tests such as an echocardiogram. Treatment may include surgery to fix any structural problems in the heart. The heart may be needed to be checked throughout adult life. Many babies are screened for CCHD at birth, but the newborn screening conditions vary by state. For more information, visit Baby’s First Test.. If your baby is diagnosed with CCHD, talk with your baby’s heart specialist about the most current treatment options. Genetic counselors and support groups are also good sources of information.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Critical congenital heart disease" 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: 6 Apr 2015

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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: 4 May 2015

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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 "Critical congenital heart disease" 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: 6 Apr 2015

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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: 4 May 2015

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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

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General Support Organizations

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General Resources

 
 
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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 "Critical congenital heart disease" returned 38 free, full-text research articles on human participants. First 3 results:

Perfusion index in healthy newborns during critical congenital heart disease screening at 24 hours: retrospective observational study from the USA.
 

Author(s): Priya Jegatheesan, Matthew Nudelman, Keshav Goel, Dongli Song, Balaji Govindaswami

Journal:

 

To describe the distribution of perfusion index (PI) in asymptomatic newborns at 24 hours of life when screening for critical congenital heart disease (CCHD) using an automated data selection method.

Last Updated: 31 Dec 1969

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Effectiveness of the critical congenital heart disease screening program for early diagnosis of cardiac abnormalities in newborn infants.
 

Author(s): Abdulmajid M Almawazini, Hamdi K Hanafi, Hasan A Madkhali, Noura B Majrashi

Journal: Saudi Med J. 2017 Oct;38(10):1019-1024.

 

To evaluate the effectiveness of critical congenital heart disease (CCHD) screening program for early diagnosis of cardiac anomalies in newborn infants.  Methods: This is a hospital-based prospective cross-sectional study conducted in the Pediatric and Neonatology Department, King ...

Last Updated: 31 Dec 1969

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CDC Grand Rounds: Newborn Screening for Hearing Loss and Critical Congenital Heart Disease.
 

Author(s): Scott D Grosse, Tiffany Riehle-Colarusso, Marcus Gaffney, Craig A Mason, Stuart K Shapira, Marci K Sontag, Kim Van Naarden Braun, John Iskander

Journal:

 

Newborn screening is a public health program that benefits 4 million U.S. infants every year by enabling early detection of serious conditions, thus affording the opportunity for timely intervention to optimize outcomes (1). States and other U.S. jurisdictions decide whether and how ...

Last Updated: 31 Dec 1969

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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 "Critical congenital heart disease" returned 2 free, full-text review articles on human participants. First 3 results:

Prenatal diagnosis of critical congenital heart disease reduces risk of death from cardiovascular compromise prior to planned neonatal cardiac surgery: a meta-analysis.
 

Author(s): B J Holland, J A Myers, C R Woods

Journal: Ultrasound Obstet Gynecol. 2015 Jun;45(6):631-8.

 

To determine if prenatal diagnosis improves the chance that a newborn with critical congenital heart disease will survive to undergo planned cardiac surgery.

Last Updated: 31 Dec 1969

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Neurodevelopmental delay with critical congenital heart disease is mainly from prenatal injury not infant cardiac surgery: current evidence based on a meta-analysis of functional magnetic resonance imaging.
 

Author(s): Y Li, S Yin, J Fang, Y Hua, C Wang, D Mu, K Zhou

Journal: Ultrasound Obstet Gynecol. 2015 Jun;45(6):639-48.

 

No consensus has been reached regarding whether brain injury related to congenital heart disease (CHD) is caused by infant cardiac surgery and/or prenatal injury resulting from the CHD. We performed this meta-analysis to identify the likely cause of neurodevelopmental delay in CHD patients.

Last Updated: 31 Dec 1969

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Health-economic Impact of Pulse Oximetry Systematic Screening of Critical Congenital Heart Disease in Asymptomatic Newborns
 

Status: Not yet recruiting

Condition Summary: Critical Congenital Heart Disease

 

Last Updated: 7 Mar 2017

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Stress Ulcer Prophylaxis Versus Placebo in Critically Ill Infants With Congenital Heart Disease
 

Status: Not yet recruiting

Condition Summary: Congenital Heart Disease; Upper Gastrointestinal Bleeding; Stress Ulcer; Infection

 

Last Updated: 12 Sep 2018

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