Her goal is to impact lives, when it comes to matters of the heart.

When Erica Shores gave birth to her daughter Hannah, now an active 5-year-old, her baby looked like a healthy newborn with rosy cheeks and peach-fuzz hair. But even before delivery, Erica knew that her little girl would not be routinely discharged since Hannah had been diagnosed with congenital heart disease in utero. “I was so very fortunate that highly trained technicians identified Hannah’s heart abnormalities at the 22-week ultrasound during my pregnancy. Had these defects been missed at that time, Hannah would likely have been sent home with a potentially fatal condition,” says Shores.

“Approximately 50 to 60 percent of major congenital heart defects are identified in utero,” notes Craig E. Fleishman, MD, FACC, FASE, and Medical Director for Non-Invasive Cardiac Imaging at Arnold Palmer Hospital for Children. “Others are detected at birth if, for example, the baby is blue or if the doctor hears a murmur [after the delivery]. But, some heart conditions are not detected until days after delivery.”

Lobbying Efforts

That’s why Dr. Fleishman, his colleagues, and moms such as Shores, along with health agencies like the American Heart Association, are lobbying to mandate a simple diagnostic assessment called pulse oximetry screening, a non-invasive test that evaluates the oxygen saturation level in a newborn’s blood. “Healthy babies typically score in the 98-100 percentiles. Anything less than 95 percent is a red flag and we’ll initiate additional testing to look at the structure of the heart,” Dr. Fleishman states. Currently, there are only a couple of hospitals in Florida, including Winnie Palmer Hospital (a part of the Arnold Palmer Medical Center), that are proactively screening newborns. According to Dr. Fleishman, within a year, thanks to pulse oximetry screenings, six babies were identified with forms of congenital heart disease. Four of those babies needed immediate cardiac surgery.

Pulse oximetry screening is a cost effective measure (just over $2 per test) with a positive return on investment. According to the American Heart Association, one study calculated that the savings in healthcare costs from the prevention of just one case of undiagnosed congenital heart disease would exceed the cost of screening two thousand newborns.

In February, Shores spoke at a press conference urging legislators to pass Senate Bill 1052, Newborn Screening for Congenital Heart Disease.  Drawing from her personal experience and sharing success stories, such as baby Lauren, who was among the newborns diagnosed via pulse oximetry at Winnie Palmer Hospital, Shores reported that approximately 400 children in Florida will die due to undetected heart defects. “Why are we not saving these lives when there is technology that can effectively do so?” she inquired.

One Lucky Baby

Patrick Doubleday’s daughter, now seven months old, was one of the children proactively screened at Winnie Palmer Hospital. “Hours before our scheduled discharge, our baby, Lauren, scored a 94 percent on the pulse oximetry test,” he recalls. An echocardiogram was performed immediately, and identified a vein in her left atrium that was not carrying blood correctly.” The following morning cardiac surgeonsimproved the blood flow by redirecting Lauren’s tiny vessels and she will likely not need any further surgery. “Without this test, I’m sure my wife Melanie and I would have been right back in the hospital with a very sick baby…or perhaps even lost our daughter.” Doubleday says that he is grateful for lifesaving champions such as Shores and the Arnold Palmer and Winnie Palmer Hospitals teams.

Though this single SuperMom and full-time Orange County School System employee doesn’t leap buildings in a single bound, Shores has been channeling her enthusiasm to help others for years! Prior to using her voice for advocacy efforts, Shores founded Precious Little Hearts of Central Florida, a local support group for families impacted by congenital heart disease.

“Hearing that your child needs heart surgery is scary! But talking to other parents who have lived through it is helpful,” says Shores, adding that the older kids enjoy comparing the ‘zipper’ scars on their chests. In addition to coordinating regular activities for the group, Shores serves as the Precious Little Hearts Team Captain for the American Heart Association’s Heart Walk, where she has been recognized as a top fundraiser in the effort to advance cardiovascular disease research and education.

Still Work to Do

Despite unanimously passing in the Senate, the pulse oximetry issue stalled in the House. But with recent recommendations from the American Academy of Pediatricians, US Department of Health and Human Services, and Florida Genetics and Newborn Screening Advisory Council, this screening may soon become standard regardless of state legislation.

“It’s not a matter of if, but really a matter of when,” says Dr. Fleishman. “Our hospital has received inquiries from other facilities which is a great sign. Not only do we want to implement pulse oximetry, but we also want to make sure that facilities can follow through with the next steps if care is needed.”

Shores says she hopes families will join her crusade in adding congenital heart disease to a long list of 34 disorders that newborns in Florida are currently screened for, particularly since heart abnormalities remain the number one birth defect in America. While this SuperMom is currently juggling play dates and politics, she says that local parents can join forces by talking to their doctors, communicating with legislators and supporting all aspects of children’s wellness issues.