Critical Congenital Heart Disease (CCHD) screening involves performing pulse oximetry tests on newborns prior to discharge from the hospital to detect heart defects. Without screening, approximately 170 babies per year were discharged with undetected CCHD. Screening costs an estimated $14-36 per baby. Many states have passed laws requiring CCHD screening in hospitals and over 90% of Kansas babies are currently screened. Resources for training and consultation on screening are available.
Early diagnosis increases these babies chance to receive specialized treatment and avoid morbidity and mortality/ disability and death
Pulse ox screening for CCHD is a simple test that compliments newborn assessment and prenatal ultrasounds.
Study focused on late detection of CCHD 1998-2007 shows out of 3746 newborns born with a CCHD 29% were detected late (>3 days after birth) (6 of those were on autopsy)
Hypoplastic left heart
Pulmonary atresia
Tetrology of fallot
Total anomolous pulm venous return
Tranpostiion of the great arteries
Tricuspid atresia
Truncus arteriosus
In 2011 screening for CCHD was added to the Recommended Uniform Screening Panel for newborns
Since then:
MO-Chloe’s Law
Effective January 1, 2014 = every newborn in the state shall be screened for CCHD (this includes newborns born in hospital settings, birthing centers, ambulatory surgical centers, and the home)
Results must be reported to parent/guardian and department of health and senior services
Refusal of the test must be documented in writing
Kansas
Quality initiative program launched in May of 2014 to increase awareness of CCHD and ensure babies are being screened
This project offered training to birthing facilities on implementation of CCHD screening, providing education, resources, and technical assistance
The goal of both departments of health are to ensure 100% of babies are being screened for CCHD to help reduce infant disability and death
Education: how to screen the right way
When we first started going out and speaking with hospitals, we found that there was an education barrier. The importance of timing was not understood and the importance of doing the pulse ox on the right upper extremity and foot was not understood.
We developed an online competency to assist with
If <24 hours you could get false positives r/t transition from fetal to neonatal circulation
> 48 hrs can miss opportunity for intervention (e.g. prostaglandin medication administration)
Upper extremity and foot = pre and post ductal measurements
Resources: what to do in the event of a failed screen
A positive screen means the patient has a sign of CCHD, but further testing is needed to evaluate and treat.
What if no pediatric cardiologists or pediatric echocardiography at your hospital?
Know your resources so in the event you have a positive, there is no delay in treatment.
What should every birthing facility ensure?
Know type and frequency of data to report
Develop educational materials on signs/symptoms and the screening protocol
Develop educational materials for parents about CCHD screening
Develop working agreements with hospitals to ensure access top ECHO and f/u for newborns with possible CCHD
Onsite ECHO
Can be supported by uploading ultrasound images electronically for rapid interpretations
Providers can support clinical management consultation while arrangements are made for neonatal critical care transport
Children's Mercy Website has training resources
The CDC has listed as its future steps:
Using data from screening in practice to adjust and refine the set of rules for pulse oximetry screening for critical CHDs
Evaluating methods to help make a diagnosis (e.g., telemedicine) for nurseries with limited resources
Linking critical CHD screening and birth defects tracking data to evaluate current screening methods
Analyzing the impact of screening on long-term outcomes
Researching screening among certain populations (e.g., those living at higher altitudes)
Tracking screening implementation across the United States
Developing a critical CHD screening procedure for Neonatal Intensive Care Units
Continuing to work with states that are starting critical CHD screening, including work on establishing screening procedures, data collection, and reporting
