Stephanie Nugent couldn’t understand why her baby kept getting sick. The answer came at Duke University Medical Center in Durham, North Carolina: Baby Carlie had SCID, or severe combined immunodeficiency — a genetic condition that leaves a child without a functioning immune system, so even a common cold can kill. But even at the age of 6 months, the diagnosis already was too late. Carlie died Feb. 23, 2000. Thus began Stephanie’s journey to make sure no other parents experienced the same loss. Her journey culminated on Oct. 19, 2015, when North Carolina Gov. Pat McCrory signed the Baby Carlie Nugent Bill into law, which adds a test for SCID to the state’s standard newborn testing regimen.
North Carolina becomes the 34th state to screen for SCID, also called “bubble boy disease.”
Stephanie, who works in Wells Fargo’s Institutional Retirement and Trust business, says, “ ‘Go be with God and tell him Thank You for letting me be your mom,’ were the last words I whispered to Carlie. In that moment, I felt a strong calling to tell her story to the world with hope of making change. No other parent should live with knowing a $5 test is all that stood in the way of watching their baby grow up.
“Today’s victory would not have come without the leadership, communication, and other skills I’ve developed at Wells Fargo, which helped in my campaign to get North Carolina to test for SCID.”
Stephanie’s persistence and advocacy will help save thousands of North Carolina children and save the state millions in healthcare costs, according to Dr. Rebecca Buckley, the Duke University Medical Center allergist-immunologist who treated Carlie in 2000 and helped Stephanie push for the legislation.
If the disease is properly diagnosed at birth and patients are given a bone marrow transplant in the first three months of life, Rebecca says, children with the condition have a 92 percent chance of survival — versus a 69 percent chance for those receiving a transplant after three months.
Without screening, she adds, the average cost of treating a SCID infant diagnosed late is nearly $3.5 million per child; the estimate is less than $100,000 for children treated before they become sick.
Rebecca says no child with SCID survives without a bone marrow transplant. A 2014 study by the Journal of the American Medical Association found that SCID occurs in about one out of every 58,000 births — and is more widespread than previously known.
“This day brings a feeling of extreme gratitude and relief, knowing that lives will be saved and babies will not have to experience serious infections before they can be treated,” she says.
Break finally comes
Stephanie had been pushing for SCID testing for 15 years, with little luck. But in 2013, Rebecca telephoned to tell Stephanie she would have an opportunity to speak in front of the North Carolina state legislature. Delays postponed the hearing until May 2015.
The call couldn’t have come at a better time. Stephanie was just wrapping up her role leading a major project at Wells Fargo — the integration of retirement plan balances to its online banking account summary page.
Mike Winner, Stephanie’s former boss, says he had no idea the “stretch assignment” would end up playing a role in the passage of the Baby Carlie Nugent bill and addition of the test for SCID.
“I think it’s important to give people the kinds of opportunities that allow them the chance to grow personally and professionally so they can showcase their unique skills and abilities,” he says. “As Stephanie led our project, she grew in self-confidence, leadership, and specifically developed a knack for taking complex information and communicating it in simple, understandable language.”
She put those skills to work often as the March of Dimes and the SCID test manufacturer added their heft to the cause and the lobbying effort, including the bill named after Carlie, picked up steam in Raleigh.
Her story served as the opening letter for the March of Dimes’ lobbying day on March 25, 2015. On May 27, 2015, she addressed the North Carolina House of Representatives. The North Carolina Senate joined the House in approval on Sept. 21.
“A lot of people question whether the things they do day-to-day in their jobs matter and if they are making a difference,” says Stephanie. “The interactions you have with others may be mastering a skill that you’ll need to achieve something big. If it hadn’t been for Mike giving me that opportunity, this bill might not have happened. What you do every day does matter!”