Information at-hand helps parents protect babies with heart defectsBy Allyson BirdOffice of Development and Alumni Affairs
Ashton Simons learned five months into her pregnancy with twin girls that the left side of one daughter’s heart had failed to form.
Simons, who lives in Columbia, decided that she would deliver Briana and Viviana at the Medical University of South Carolina so that doctors could move Briana directly to the Neonatal Intensive Care Unit after birth. Simons’ doctors warned her that a delivery before 34 weeks meant Briana would not breathe on her own.
Then, at 32 weeks, Viviana’s heart rate dropped, as the umbilical cord knotted and wrapped twice around her neck. Simons had to deliver her girls that day by an emergency Caesarian section.
“Doctors gave Briana a less than 5 percent chance,” Simons said.
But Briana took her first breaths on her own.
Simons’ daughter numbers among the 20 to 30 patients treated in the MUSC Pediatric Cardiology department each year for hypoplastic left heart syndrome, a defect in which babies are born with only one pumping heart chamber. Their births mark only the beginning of a complex medical journey that involves everything from specialized feeding plans to developmental studies.
Nurse practitioner Frances Kline Woodard arms new parents with a simple tool to ensure that their fragile babies get the care they need: binders containing helpful, and sometimes life-saving, information.
These resource books include a first page with all the critical information that a parent might need to provide if her child winds up in the emergency room. The remaining sections, marked off with tabs, include diagrams of the heart condition, a list of surgeries and medications and outlines of other services the baby receives, such as occupational therapy.
The YES Campaign dedicates the money needed to provide every parent with a binder and monitoring by a pediatric cardiologist, a nurse practitioner and a registered dietitian. The campaign, short for Yearly Employee Support, encourages MUSC employees to donate toward education, patient care and research projects in need of extra cash.
“We were doing this before the YES Campaign funding, but I was buying the binders out of pocket,” Woodard said.
MUSC Pediatric Cardiology belongs to the National Pediatric Cardiology Quality Improvement Collaborative, a group of pediatric centers across the country that share a goal of improving care for single ventricle patients. Many of those patients come to MUSC from hundreds of miles away, and then their referring pediatricians back home must provide their ongoing care and meet their complex needs.
”The main issue is they get pediatric cardiac care here but then leave,” she said. “The binders aid in improving the communications among all those involved with the care of these patients. This has helped bring everyone back together.”
Baby Briana successfully underwent two of three surgeries that all patients with her condition face in the first three years of life. Ashton Simons adds new information to her binder for Briana’s care along the way.
“In case anything happens,” Simons said, “I know what to look for.”