CCHD Educational Materials for Parents

Critical Congenital Heart Disease Course and MOC Part 2 – Critical Congenital Heart Disease Screening

This educational module offers evidence-based content for healthcare providers on the identification and implications of CCHD, assistance in establishing a screening program, and resources for helping parents understand the testing process and results.

CCHD Screening Program: Checklist for Informing Parents and Guardians

Entirely bilingual 7-page handout with components pertaining to both providers and parents, including several photos and bulleted answers to FAQs.  Final page is a list of support groups, online resources, books for parents, books for children with heart defects, and books for siblings.

Nationwide Children’s Heart Center CHD Screening FAQ

Brief, 2-page handout answering pulse oximetry and CHD FAQs in small paragraphs, from the Columbus Nationwide Children’s Heart Center.  

Indiana Baby Heart Screening Newborn Heart Defect Screening

Trifold pamphlet by the Indiana Baby Heart Screening organization with various facts about CHD and pulse oximetry screening, featuring the stories of Lincoln and Cora, two babies who passed away because of their heart defects, but who may have been saved with earlier pulse oximetry screening.

Michigan Newborn Screening Parent Fact Sheet

One page handout by the Michigan Newborn Screening Program including brief, bulleted answers for issues surrounding the question, “What does a low result mean?” such as a description of a pulse ox screen and a heart echo, the definition of CCHD, and problems CCHD can cause.

Michigan Newborn Pulse Oximetry Screening Parent Fact Sheet

One page handout by the Michigan Newborn Screening program on pulse oximetry screening.  Contains brief paragraph responses to questions such as, “What is newborn screening?” and “What happens if pulse oximetry reading is low?”

Michigan CCHD Screening Suggested Resources for Families

A simple list of support groups and online resources, books for parents, books for children with heart defects, and books for siblings by the Michigan CCHD Screening group.  

MultiCare Family Birth Centers

A modern, professional-looking trifold pamphlet by the MultiCare Family Birth Centers containing signs and symptoms of heart disease in infants and children, responses to FAQs about CHD, and a list of MultiCare providers who treat CCHD. Think Heart

An acrostic for H-E-A-R-T providing simple reminders for checking for CCHD: “Heart rate: Too low or high?, Energy: Excessively sleepy?, Appearance: Pale, dusky, or blue skin tone?, Respiration: Breathing too fast or too slow?, and Temperature: Cold to the touch, especially hands or feet?”. 

Trauma Reactions in Mothers and Fathers after their Infant’s Cardiac Surgery

A peer-reviewed journal article in the Journal of Pediatric Psychology by Franich-Ray et al finding that approximately one-third of parents overall, as well as one-third of mothers and close to one-fifth of gathers, experiences trauma symptoms consistent with a diagnosis of acute stress disorder.  The authors found that most parents experienced at least one symptom at a clinical level, with symptoms of dissociation being the most commonly endorsed.  The article highlights the need for clinical supports for parents.  

University of Utah Fact Sheet for Patients and Families: Newborn Screening for Critical Congenial Heart Disease

A 2-page parent handout by the University of Utah that describes congenital heart disease and pulse oximetry screening in brief paragraphs.  Also includes a list of symptoms which, if observed, the parent should call their provider right away.