Nobody would have faulted Susan and Jason Smith if they had hunkered down in a depressed fog after the death of their baby girl Emerson Rose in 2011.
But they couldn’t go into that emotional shell. They had to do something to celebrate a precious child who remained remarkably joyful through a short life spent in the pediatric cardiac intensive care unit at MUSC.
Slightly more than a year later, medical devices purchased in her honor have the potential to save lives in seven South Carolina hospitals. The worst pain imaginable has been turned into a positive force.
“God is using her, and that was our prayer,” Susan Smith says. “At first, our prayer was that God would heal her. But ultimately, our prayer was that God would use her. That’s why we were here. It’s why we were living.”
Tests during Susan’s pregnancy had revealed Emerson Rose, the Smith’s first child, was missing one of the chambers in her heart. She had open-heart surgery at MUSC at 4 days old. Everything went well, and Emerson Rose thrived.
She had maybe three bad days in her 76 here on Earth, Susan said. Her last full day, Emerson Rose was doing so well her parents were allowed to take her for a short stroll outside. She smiled and cooed.
That night, Susan told Jason: “This has been the perfect day.”
The next day, June 26, 2011, Emerson Rose spit up and aspirated. Her little repaired heart struggled with the stress. She couldn’t survive a clog in the shunt used in the repair.
Susan and Jason quickly turned to their religious faith, asking God to show them how to react. They went on a church mission trip the next month and came back convinced they had to start a foundation to help children with heart problems.
Susan had planned to quit her job at Clemson University to become a stay-at-home mom. Jason, who buys and sells real estate, by chance had down-sized his business to a one-man operation. They had the time and ability to throw themselves into helping others.
Jason’s accountant volunteered to do the work to set up non-profit status for the Emerson Rose Heart Foundation. One of Susan’s friends volunteered to organize the first big fundraiser, a golf tournament that raised nearly $8,000.
Susan and Jason used much of that to pay for gas cards and meal tickets for parents of cardiac heart patients at MUSC. Then they and moved to Charleston from Clemson for seven months to volunteer for a group that had been a saving grace for them during their stay at MUSC, Mount Pleasant-based CrossBridge Family Ministries.
Melissa Altman, CrossBridge’s director, said much of the organization’s help goes to parents from the Upstate. (MUSC is the only hospital in the state with a cardiac pediatric unit.) Before the Emerson Rose Heart Foundation, CrossBridge got little financial help from the Upstate.
“They’ve been a Godsend,” Altman said.
But helping parents already at MUSC wasn’t enough. Susan and Jason wanted to do more to help prevent pediatric heart problems. Research seemed the best route, but research requires millions of dollars and the payoff can be decades down the road.
One day, Susan read about efforts in several states to require pulse oximeters in hospitals that have birth centers. She thought, here is a proven prevention measure that doesn’t require extraordinary funding.
Pulse oximeters, non-invasive devices used to check the saturation of a patient’s hemoglobin, have been around for decades. When used to screen for congenital heart defects in newborns, however, they often raised concerns with false positive results. But medical studies and improved technology have cut down on the false positives in recent years.
The U.S. Department of Health and Human Services first recommended the use of pulse oximeters for newborn heart testing in 2010. A few states now require hospitals to provide pulse oximeter testing for all newborns. South Carolina hasn’t gone that far yet.
Susan and Jason started lobbying for a state requirement for pulse oximeter testing, but rather than just ask the Legislature to require something that had costs, they started raising money to cover the expenses themselves. The devices cost about $500, and hospitals that deliver babies would need several devices to have them available for all births.
“This is something we can do now,” Susan says. “We don’t have to wait 40 years for research to help these babies.”
Susan wrote a grant request and got $3,000 from the Dabo Swinney All-In Foundation to pay for the screening devices for Oconee County Medical Center. The hospital had been looking into using pulse oximeters for newborns, said spokeswoman Heather Goss. The donation hastened the testing program.
“We have implemented it,” Goss said. “It’s inexpensive, and it can really make a difference.”
While Oconee has yet to identify a congenital heart problem using the pulse oximeters, the additional screening has helped the staff notice a couple of other serious conditions, Goss said.
Since that first donation, the Emerson Rose Foundation has bought pulse oximeters for six other South Carolina hospitals – the Greenville Hospital System, Carolina Pines Regional Medical Center in Hartsville, Marlboro Park Hospital in Marlboro, McLeod Regional Medical Center in Florence, Piedmont Medical Center in Rock Hill, Conway Medical Center and Chesterfield General Hospital in Cheraw.
Many other hospitals have started pulse oximetry programs for newborns on their own, including Lexington Medical Center and Palmetto Health Baptist and Palmetto Health Children’s Hospital, according to the S.C. Department of Health and Environmental Control.
“Our ultimate goal is to buy them for every hospital who wants them,” Jason says. “We can fill a hole until it becomes law. Even when it becomes law, we want to continue to fund it.”
The pulse oximeter test wouldn’t have saved Emerson Rose. Her condition already had been recognized before her birth. But the tests might save some child who has one of several less obvious congenital heart problems. (The foundation did raise $10,000 to help MUSC buy a special centrifuge that removes fat from breast milk, a procedure required for Emerson Rose’s condition.)
The slim chance that a pulse oximeter might help another child is enough to keep the Smiths telling the sometimes painful story of their own loss as they raise money for the foundation.
“God has given us a peace about this,” Susan says. “Don’t get me wrong. There are days I don’t want to run this stupid foundation. I’d rather be pushing a stroller. But through all the pain we suffered, it had been worth it to have her those 76 days.”