DPH: Critical Congenital Heart Disease (CCHD)

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 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.

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 Subsection (b) of section 19a-55 of the 2012 supplement to the general statutes is repealed and the following is substituted in lieu thereof (Effective October 1, 2012):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

Two hospitals, Yale New Haven Children’s Hospital and Hartford Hospital are pilot hospitals participating in a 3-year Health Resources and Services Administration (HRSA) New England Regional Approach to CCHD grant (6/1/12-5/31/14).

There are currently 12 states funded under this HRSA grant.

Map of current status of states’ and CCHD legislation:

http://cchdscreeningmap.org/

FOR MORE INFORMATION AND RESOURCES:

Newborn Screening

Facts About Critical Congenital Heart Defects

 
 




Content Last Modified on 1/5/2015 3:16:24 PM