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Critical Congenital Heart Disease (CCHD)

Critical congenital heart disease (CCHD) is a term that refers to a group of serious heart defects that are present from birth. These abnormalities result from problems with the formation of one or more parts of the heart during the early stages of embryonic development. CCHD prevents the heart from pumping blood effectively or reduces the amount of oxygen in the blood. As a result, organs and tissues throughout the body do not receive enough oxygen, which can lead to organ damage and life-threatening complications. Individuals with CCHD usually require surgery soon after birth.

Although babies with CCHD may appear healthy for the first few hours or days of life, signs and symptoms soon become apparent. These can include an abnormal heart sound during a heartbeat (heart murmur), rapid breathing (tachypnea), low blood pressure (hypotension), low levels of oxygen in the blood (hypoxemia), and a blue or purple tint to the skin caused by a shortage of oxygen (cyanosis). If untreated, CCHD can lead to shock, coma, and death. However, most people with CCHD now survive past infancy due to improvements in early detection, diagnosis, and treatment. (From:http://ghr.nlm.nih.gov/condition/critical-congenital-heart-disease)

According to the Centers for Disease Control and Prevention (CDC), About 1 in every 4 babies born with a heart defect has a critical congenital heart defect (critical CHD, also known as critical congenital heart disease). Babies with a critical CHD need surgery or other procedures in the first year of life. About 7,200 (or 18 of every 10,000) babies born every year in the United States have CCHD. Babies with CCHDs usually require surgery or catheter intervention in the first year of life. Some babies born with a heart defect appear healthy at first and can be sent home with their families before their heart defect is detected.  CCHDs can potentially be detected using screening testing for CCHD. (From:https://www.cdc.gov/ncbddd/heartdefects/cchd-facts.html)

 

Connecticut State Legislation:

In May of 2012 the following state legislation was signed into law by Governor Malloy regarding screening for CCHD.

 

Senate Bill No. 56

Public Act No. 12-13

AN ACT CONCERNING CRITICAL CONGENITAL HEART DISEASE SCREENING FOR NEWBORN INFANTS.

 

Be it enacted by the Senate and House of Representatives in General Assembly convened:

Section 1. Subsection (b) of section 19a-55 of the 2012 supplement to the general statutes is repealed and the following is substituted in lieu thereof (Effective October 1, 2012):

(b) In addition to the testing requirements prescribed in subsection (a) of this section, the administrative officer or other person in charge of each institution caring for newborn infants shall cause to have administered to every such infant in its care (1) a screening test for cystic fibrosis, [and] (2) a screening test for severe combined immunodeficiency disease, and (3) on and after January 1, 2013, a screening test for critical congenital heart disease. Such screening tests shall be administered as soon after birth as is medically appropriate.

Effective January 1, 2013, all Connecticut hospitals are required to perform a screening for CCHD. At this time, there is no requirement that hospitals report screening results to the Department of Public Health (DPH). The DPH does not collect data on any of these screenings or perform follow-up on positive screens: all of this is done at individual hospitals.  In addition, the legislation allows hospitals discretion over the type of testing to be used when screening for CCHD, ensuring flexibility in responding to changes in best practices and technology.  The DPH will, however, monitor whether CCHD screenings have occurred. Results of screenings must be in the patient’s medical record in the event that DPH investigates a complaint regarding the testing, or lack thereof, or if an infant is selected for the sample of patients reviewed during routine onsite visits.

In October 2018, the state statue was revised that allowed CCHD screening to be reported to the CT Department of Public Health.

 

Updated legislation:

Sec. 14. Subsection (b) of section 19a-55 of the general statutes is repealed and the following is substituted in lieu thereof (Effective October 1, 2017): On and after January 1, 2018, the administrative officer or other person in charge of each institution caring for newborn infants who performs the testing for critical congenital heart disease shall enter the results of such test into the newborn screening system pursuant to section 19a-53, as amended by this act. Such screening tests shall be administered as soon after birth as is medically appropriate.

To meet this new requirement, there is now, as of 2/14/18, a new question package within the Maven Newborn Screening System (NSS). If you do not have access to that system, the reporting form can be faxed to DPH.

 

CT DPH Reporting Form: Click Here

 

Support Groups and Online Resources

Centers for Disease Control and Prevention (CDC)

Congenital Heart Disease Screening Program Toolkit

NewSTEPs - partners with state newborn screening programs and federal agencies interested in CCHD to provide a central location for CCHD resources.

American Academy of Pediatrics (AAP)

Baby's First Test

Children's Heart Association

Children's Heart Foundation

Kids with Heart

 

Contact information:

Connecticut Department of Public Health

Birth Defects Registry Program

410 Capitol Avenue, MS # 11 MAT

P.O. Box 340308

Hartford, CT 06134-0308

 

Phone: (860) 509-7499

Telecommunications Relay Service 7-1-1

Fax: (860) 509-7120

Email: karin.davis@ct.gov