Protect and Empower the Community

The Emerson Rose Heart Foundation is committed to empowering caregivers and protecting children. We do this by creating and providing educational materials on CHDs aimed at equipping caregivers to provide the best care possible for their child. Additionally, we have worked with lawmakers to enact legislation aimed at protecting every child born in the state of South Carolina.

Emerson Rose Act

Each year 60,000 babies are born in South Carolina. Thanks to the Emerson Rose Act, every baby born in SC will be screened for potential heart defects before being discharged from the hospital. Babies born in birthing centers will be screened when they are around 24 hours old.

The Emerson Rose Act was enacted and signed by Governor Nikki Haley on June 13, 2013 after the Emerson Rose Heart Foundation worked alongside State Senator Thomas Alexander and the American Heart Association. The Emerson Rose Act requires every newborn in South Carolina to be screened for heart defects before they are discharged from the hospital. The legislation is named after Jason and Susan Smith’s daughter, Emerson Rose.

All babies are screened, even if they look healthy, because some medical conditions cannot be seen by simply looking at the baby. Finding these conditions soon after birth can help prevent serious problems, such as brain damage, organ damage and even death. Newborns are screened using a device called Pulse Oximeter. Pulse Oximetry screening is a non-invasive test that measures the oxygen in the blood. This test can help identify critical congenital heart defects (CCHDs) in babies before they leave the hospital. Early detection is critical in these babies and allows them to be treated immediately, giving them a higher chance of survival.

“Had it not been for the screening that you fought so hard for, this baby would have been sent home and would probably have been just another statistic. I just wanted you to know, you helped save this little guy. Thank you so much for the difference you have made to the children and families of South Carolina.”

Jean Burleson, RN | Conway Medical Center of South Carolina

Educational Materials

The Emerson Rose Heart Foundation believes knowledge is power. This is why we work diligently to provide educational materials to heart families, with the goal of empowering parents. When a child requires open-heart surgery to repair a CHD, it is essential that parents obtain accurate and detailed information. The My Heart Binder and the HLHS Booklet have been created to give parents the information they need to best care for their child.

HLHS Booklet

In 2015, the ERHF® and the Medical University of South Carolina (MUSC) joined forces to provide a booklet for parents whose children have received a new diagnosis of Hypoplastic Left Heart Syndrome (HLHS). In addition to funding the project, ERHF medical advisor Dr. Sinai Zyblewski and board member Liz Lucey, PCICU R.N., provided much of the content. With the HLHS Booklet, parents can learn more about the defect, the care their child will receive, who will be taking care of their child and the support available.

Download the HLHS Booklet

My Heart Binder

The ERHF created the My Heart Binder in 2015 as a state-wide project that involves all four heart centers in South Carolina. Each family who has a child born with a CHD that requires surgery will receive a My Heart Binder at their pediatric cardiologist’s office. The My Heart Binder contains important information about CHDs, prenatal care, what to expect when your child is born and the day of surgery, along with many resources. There are also tabs designed to house all medical records from birth to adulthood.