COLUMBIA — Emerson Rose Smith lived for just 76 days, but she left quite a legacy.
A new South Carolina law requiring hospitals to test every newborn for congenital heart defects within 48 hours of birth can be credited to her parents, Susan and James Smith of Clemson, who say their faith is helping them turn a devastating loss into a lifesaver. With the couple's advocacy, the Emerson Rose Act received unanimous approval in the Legislature last month and takes effect in September.
South Carolina becomes the 21st state with such a law, according to the American Heart Association. It recommends that all states impose the mandate.
The Smiths have committed to providing all 43 birthing hospitals in South Carolina with the noninvasive screening devices they need to comply.
Our goal is to fund this so it doesn't trickle down to taxpayers. We're firm believers of not having a law for everything, Susan Smith said. But this is a simple, noninvasive, inexpensive test that will save babies' lives.
The Emerson Rose Heart Foundation, which the Smiths created shortly after their daughter's death in June 2011, has so far spent $16,500 on 36 pulse oximetry devices, which detect malformations of newborns' hearts by measuring blood oxygen levels. The devices went to nine in-state hospitals; one each in Illinois, Indiana and Louisiana; and one in Honduras. The foundation also has given more than $23,000 to support families with hospitalized children, funding gas cards, meal tickets, rental assistance, and recliner chairs so parents can rest at their child's hospital bedside, Smith said.
While we were in the hospital you sit there day in and day out you see sick babies all around. God kept putting it on my heart to do something, she said. We wanted to turn our pain into something to glorify God.
Emerson Rose was born April 11, 2011, with hypoplastic left heart syndrome, meaning she was missing half her heart. A mid-pregnancy ultrasound had detected a heart abnormality, so the Smiths made arrangements for her delivery at the Medical University of South Carolina in Charleston, where she could have open heart surgery at just four days old.
She never left MUSC. The surgery went well, but Emmerson Rose died of complications a day after the Smiths were allowed to take her outside for the first time in a stroller.
We were absolutely devastated, Smith said.
But she said she's thankful they knew of the heart defect beforehand and hopes the required screening provides other parents the necessary notice.
You'd have never known anything was wrong, she said. She came out pretty and pink and crying and perfect. If we hadn't known, we would've been discharged because she looked perfect almost to the point we didn't believe she had a heart defect.
According to the American Heart Foundation, routine prenatal ultrasounds detect less than half of congenital heart defects, which occur in eight of every 1,000 live births. Most newborns who undergo surgery for the malformation will reach adulthood, but that requires early detection.
Pulse oximetry screening is a painless test that takes less than a minute, and new research suggests it can lead to detection in more than 90 percent of cases, the foundation reports.
The state hospital association initially balked at the legislation.
Rick Foster, its vice president of quality and patient safety, said mandating a specific test raised concerns. The group removed its opposition after legislators allowed for other types of screening as technology changes and included wording recognizing that hospitals were already working with the state's Medicaid agency on voluntary policies.
It's a slippery slope when you start to legislate specific procedures, Foster said. In this case, there's recent evidence that it makes sense to do the screening. We were working on it because it's evidence-based, but there's a risk that legislation will be passed without evidence that it's effective.
Currently, all 43 birthing hospitals have screening policies in place, and the association is working with them on what to do when a newborn tests positive, Foster said. He said he was unsure how many screening devices still need to be purchased statewide, but added that the law's Sept. 11 effective date won't be a problem.
The bill's sponsor, Sen. Thomas Alexander, said he worried the early opposition would block passage this year.
It's such a no-brainer from the standpoint of being proactive, said Alexander, R-Walhalla, whose constituents include the Smiths. For them to turn a tragedy into such a triumph what they're able to do for so many infants to get help in time is a tremendous legacy for Emerson Rose.
Besides their foundation, the Smiths stay busy with two baby girls at home, ages three months and eight months. After Emerson Rose died, the couple decided to go through the adoption process, then Susan Smith became pregnant.