Critical Congenital Heart Disease
The Wisconsin Department of Health Services (DHS) added, by emergency rule, screening for critical congenital heart disease (CCHD) by pulse oximetry (POX) to the Wisconsin Newborn Screening Program’s panel of conditions. This rule became effective on July 3, 2014.
Every infant born in a hospital is required to have CCHD screening prior to discharge. Babies born out of hospital are also required to be screened.
Why is it important to screen for CCHD?
CCHD requires prompt diagnosis and treatment for the best outcome. Babies with undetected critical congenital heart defects are at risk for death or significant disability.
What do I need to do if I am a hospital or birth facility, NICU or special care
nursery, or a home birth provider, and I am not currently screening?
- Visit Wisconsin SHINE (Screening Hearts in Newborns) Project’s website for information on how to appropriately screen newborns, including a screening toolkit. The Wisconsin SHINE Project, a collaborative effort of the University of Wisconsin School of Medicine and Public Health, the Medical College of Wisconsin, Wisconsin DHS, and Wisconsin State Laboratory of Hygiene, facilitates implementation of universal screening for CCHD. If further assistance is needed, SHINE personnel can be reached at 608-265-1894.
- The Wisconsin SHINE Project provides the following assistance:
- POX screening information
- Standardized protocols for CCHD screening in the well-baby nursery and NICU
- Technical assistance for questions about screening policy or procedure
- Staff and parent education materials
- Information on screening results reporting
- Contact Wisconsin SHINE Project personnel at 608-265-1894:
- A baby FAILS the pulse oximetry screen for CCHD
- A baby is born who has known or suspected CCHD
- A baby does not have a newborn blood screening card where pulse oximetry screen results can be recorded
How should a hospital or birth facility, NICU or special care nursery, or a home
birth provider report results for the pulse oximetry screening for CCHD?
- Report CCHD screening results on the newborn screening blood card. Screeners should mark PASS and fill in time and date of POX screening, FAIL, or specify the reason for NOT SCREENED.
- Reporting of CCHD results should NEVER delay the submission of the blood card.
- For infants with pulmonary disease requiring treatment with oxygen:
- Photocopy newborn screening blood card before collecting newborn blood screen and mark “not screened” on newborn screening blood card.
- When pulmonary disease and need for oxygen resolves, screen infant and record results on photocopy of newborn screening blood card.
- Send the photocopy of newborn screening blood card with CCHD screening results to the Wisconsin State Laboratory of Hygiene.
- For a baby that does not have a newborn blood screening card where pulse oximetry screen results can be recorded, contact Wisconsin SHINE Project personnel at 608-265-1894.
What do I do if I have an infant that fails the pulse oximetry screening for CCHD?
- Assure that the infant receives a complete clinical evaluation to assess for the cause of hypoxia, and begin treatment as indicated.
- Consult established neonatal intensive care and pediatric cardiology referral centers for further and ongoing care of the newborn.
- Contact Wisconsin SHINE (Screening Hearts in Newborns) Project personnel at 608-265-1894.
If an infant passes the pulse oximetry screening, are all forms of significant
neonatal heart disease excluded?
Not all significant congenital heart disease will be excluded by pulse oximetry screening; clinicians should continue to consider the possibility of heart disease in infants based on the clinical scenario.
What do I do if I have an infant with a known or suspected CCHD?
- Proceed with care as in the past.
- For program quality assurance, please report all such cases to Wisconsin SHINE program personnel at 608-265-1894.
What do I need to do if I am a primary care provider for a newborn?
Know the results of the newborn screening tests (blood, hearing, and POX for CCHD). If you do not have results for the POX screening for CCHD, contact the hospital of birth, if the infant was born in a hospital; or for out-of-hospital births, contact the birth attendant for the screening result.
Where can I get additional information?
The Wisconsin SHINE Project has developed educational materials for hospitals and out of hospital and health care providers regarding recommended screening protocols, equipment selection, and other information to support the implementation of CCHD screening. These materials are available at http://wisconsinshine.org/. Included on the website are an online learning module and video tutorial. Information for families is available in English and Spanish at http://wisconsinshine.org/families/.
You can also visit the DHS website for information regarding the Newborn Screening legislation changes at www.dhs.wisconsin.gov/cyshcn/newbornscreening/updates.htm (link updated 12/16/14).
If you have questions for the Department of Health Services, contact Sharon Fleischfresser, MD, MPH, Medical Director of the Wisconsin Children and Youth with Special Health Care Needs Program at Sharon.Fleischfresser@wisconsin.gov, 608-266-3674; or Gary Kirk, MD, Chief Medical Officer for the Bureau of Community Health Promotion at Gary.Kirk@wisconsin.gov, 608-266-5818.
From the Wisconsin Department of Health Services, Division of Public Health, dhs.wisc.gov, July 2, 2014.