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.  

For those of you requiring IRB approval click here.

Initiative Data: The official start date for initiative data is February 01 2014.  Any patient admitted on Feb 1st is eligible for the CMOP database.  

C-MOP Data Dictionary

C-MOP Data Collection Tool

Accessing Reports

PDSA Worksheet

Data Submission Due Dates: Please have all initiative data submitted by the 10th of every month for the previous month i.e. all January data should be submitted by February 10th. 

Attention Data Collectors:  Instructions on how to obtain access to Delphi to submit data.

Roster Changes: Please make sure to send me any changes in your team roster.  We would like to be able to provide all team members with the latest information about the initiative and we can only do that with your help.

Webinars: Monthly webinars will be held on the 2nd Tuesday of every month at 12:00pm beginning Tuesday February 11th.  Please go ahead and reserve these dates on your calendars.  Your team will need to schedule at least monthly meetings to review data, make plans for PDSA cycles, and plan for next steps.  Please set up times to meet with your Executive Champions to update them on your progress and to ask for their help to meet your goals. PQCNC would suggest you meet with them every other month but no less than every quarter.

Keith Barrington highlights this article on his recent blogpost at Neonatal Research.  The article is from parents of extremely preterm infants born in Canada and Australia. It is a review of experiences and leads to a list of recommendations made by the parents to neonataology providers counseling families facing a preterm birth. The recommendations provide much food for thought…which I am still digesting. 

    Recommendations for healthcare providers 

    1. Tell women that there is nothing they could have done to prevent the premature birth from happening.

    2. Our unborn children have a story and are part of our hopes and dreams. Do not use gestational age to categorise our child. Ask us if our unborn baby has a name.

    3. Each baby is different. Have a personalised approach. You can tell us what generally happens to children about to be born at the same stage of gestation as our child, but please also describe to us the particularities of our child that will influence his or her outcome.

    4. Each family is different. We disagree that every family needs to receive extensive information about everything negative that may happen. Some parents want statistics, others want the general picture. Some parents want to make important decisions on their own, while others want recommendations. Please listen to us individually.

    5. We need to trust you. Do not tell us that babies at 22 or 23 weeks do not survive. Do not tell us that most preterm infants are disabled. We rely on you to know your data. Reflect on the difference between medical numbers and medical values. Do not tell parents that their child will have a negative impact on their family. You do not have data to support these claims. Many clinicians decide that giving babies a chance is not worth it for a 10%-20% survival rate. Our discussions should be about values and not so much about percentages.

    6. Give us balanced information. Tell us about what our children may, or may not, be able to do. Also tell us about the quality of life of other preterm infants have when they get older

    7. Words are important. Before our child’s birth, do not ask us if we want to do “everything” or “nothing”. Have you ever met parents who wanted “nothing” for their child? Do not use the word resuscitation, as premature infants are not usually defibrillated. That is what we think resuscitation means when you use that language. Use the word stabilisation instead.

    8. Do not take away the hope we have. There is always hope that we will deliver tomorrow. There is hope that we will be able to spend some time with our child. There is hope that we can survive the death of our child with positive memories. Do not abandon us. Instead, tell us that you will be there whatever happens.

    9. Empower parents. When other family members are present, emphasise that strong families are important.

    10. Be proud of the work you do. It is so important to us. You make it possible for us to share precious time with our babies. You are the heroes for so many families. You help babies survive and we are thankful for that.


Keith Barrington makes a reasonable analogy regarding the position statements for most organizations regarding counseling for preterm birth. “One thing I want to re-iterate is the need to give balanced information. Most position statements and decision aids for extreme preterm delivery are designed to ensure that families know all of the bad things that can happen to extremely preterm infants. It is analogous to a decision aid for prostate cancer therapy only listing death, infection, incontinence and impotence as potential outcomes of a prostatectomy, without mentioning that it might also save your life! How could anyone make a balanced, informed, decision if they only hear of the downside?”

I would add that his analogy, standing professional statements and the listed parental recommendations could, in my view, also be applied to counseling for families of infants with trisomy 13 and 18.     

- Marty McCaffrey

PS Can’t recommend Keith’s blog highly enough.