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Editor's Notes

1. 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
2. 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
3. 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.
4. 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