Emerson Rose Act delivers new hope

The Emerson Rose Act, named after Emerson Rose Smith (pictured), requires South Carolina hospitals to screen newborns for heart defects before they go home. The state health department's director of research says he thinks the 2013 law may be responsible for a significant decrease in infant deaths related to birth defects last year.

Years before her name was attached to a life-saving law, Emerson Rose Smith was born in Charleston with a heart defect her little body couldn't handle.

She lived at the Medical University of South Carolina that summer in 2011, hooked up to machines, fighting for life. Emerson's parents, Susan and Jason Smith, spent more than two months at MUSC with the baby. Their home in Clemson was four hours away.

Susan and Jason rocked Emerson at the hospital and dressed her up in pink and purple baby clothes. She wore a onesie that said “Daddy adores me.”

The Smiths sang Emerson songs about Jesus and read her the Bible and took more than 1,200 beautiful pictures on their cellphones. She smiled back at them.

“She smiled almost every single day,” her mom said.

Then their daughter started improving. She gained weight. Doctors stepped Emerson down from the pediatric intensive care unit to a private room and the Smiths started talking about taking her home.

“We were able to stroll her outside. She was doing phenomenal,” Susan said. “The next day, early in the morning, she spit up and aspirated.”

Healthy babies spit up all the time. They also occasionally choke on their milk, and they're usually able to cough it up without a problem. But Emerson was already fragile from her heart defect and couldn't cough to clear her airway. She died on June 26, 2011, 76 days old.

“There's still not a day, not even half a day, when we don't think about her and her little life,” Susan said.

Since 1995, more than 1,600 South Carolina babies have died from congenital malformations and deformations — birth defects, for short — making them the No. 1 cause of infant death in the past 20 years.

The number of babies that die in this state each year from birth defects has ranged from 71 to 98 — with one notable exception. Last year, the number decreased substantially to 56.

Michael Smith is the state health department's director of research and planning. He isn't related to Susan and Jason Smith, but thinks their little Emerson Rose may deserve some credit for the improvement.

The Emerson Rose Act, signed into law by Gov. Nikki Haley on June 13, 2013, requires all hospitals to screen newborns for heart defects before they go home. Emerson's parents pushed the General Assembly to pass the law after her death. Legislators approved it unanimously.

Michael Smith studied the new numbers when the state health department released the 2014 infant mortality rate earlier this month. He noted that the number of babies who died from birth defects in 2014 — the first full year after the Emerson Rose Act became effective — dropped to its lowest level ever. He cautioned anyone from reading too much into a one-year reduction — “statistical blips are very possible,” he said — but he still expressed optimism that the law is doing its job.

“To see a 23 percent decrease. ... It's clearly moving in a positive direction,” he said.

Susan and Jason Smith are raising two girls now, Rowan, 3, and Campbell, 2. They also run the Emerson Rose Heart Foundation, a nonprofit they named after Emerson to raise awareness and money for congenital heart defect research.

Susan said she hadn't heard about the drop in infant deaths until The Post and Courier called. “This is just very exciting news for us to hear that the Lord is still using her,” she said.

Reach Lauren Sausser at 843-937-5598.

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