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Screening for Critical Congenital Heart Defects

In 2011 Critical Congenital Heart Disease (CCHD) was added to the federal Recommended Uniform Screening Panel based on the recommendation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). Since then, birthing facilities and state newborn screening programs have been strategizing about implementation. In 2012 Health Resources and Services Administration(HRSA) awarded a number of grants to further this implementation effort. Tthe Utah Department of Health, was pleased to be the only regional applicant to receive the grant.

CCHD Demonstration Project

The goal of the Utah Congenital Heart Defect Screening Project:

ITo develop processes for CCHD screening that will improved health outcomes for newborns with CCHD, and their families. This collaborative project aims to enhance and expand existing networks among state public health departments and birthing facilities, and to share resources and expertise in developing CCHD newborn high altitude screening protocols, educational materials and program evaluation.

To date, over 5,000 newborns in Utah have been screened as part of the pilot project, with the expected screening of over 10,000 babies by the conclusion of the pilot. One apparently healthy baby with CCHD has been identified and has already received life-saving surgery. A handful of babies with secondary diagnoses have also been identified and are receiving treatment.

In March 2013, legislation requiring CCHD screening for all newborns in Utah was signed into law. October 1, 2014 , all birthing facilities in Utah will be required to implement a protocol to screen babies for CCHD. The educational materials developed through this pilot project are useful resources for health care providers developing strategies to provide this potentially life-saving screening for all babies. For information on legislation regarding CCHD please Click Here

1 in 100 babies are born with a congenital heart defect.Critical Congenital Heart Disease is defined as a heart defect that is present at birth and can cause serious illness or even death if not detected in the first few weeks of life. The seven CCHD defects targeted by CCHD screening are:

It is important to remember that Screening for CCHD may not detect these defects 100% of the time and this screening may also pick up other heart defects or conditions in the infant. The CCHD screening is a simple, painless, non-invasive, test that uses a pulse oximetry to monitor the newborn oxygen level.

If a baby does not “pass” the CCHD screening, further evaluation by the physician is needed right away to determine if the needs an echocardiogram to confirm a CCHD. This physician evaluation should be done before the baby leaves the hospital. Hear Eve's Story.

The CCHD screening results will be reported through birth certificate electronically to the Department of Health for education, surveillance and quality assurance monitoring.

Screening Protocols

By October 1, 2014, every birthing facility in Utah must have established protocols for performing CCHD screening on newborns at their facilities, as well as following up on abnormal screens. Protocols should address the following questions:

  1. Who will screen and when?
  2. Who will be notified of the abnormal screening results?
  3. How will the baby be evaluated following an abnotmal screening result?
  4. Where are the results entered into the EMR?
  5. Who will enter the data into the EMR?

NEED ASSISTANCE?

Amy Nance, MPH
801-883-4661 aenance@utah.gov

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Welcome to the Utah Birth Defect Network

The Utah Birth Defect Network (UBDN) seeks to prevent birth defects and secondary disabilities by monitoring occurrence, conducting research, providing education and outreach. We hope that the information on this Web site will meet your needs. If you need further information about birth defects or a referral to available services please contact us at 801-883-4661 or 1-866-818-7096.