Kelsey Thomas thought the nurses had forgotten about her. At 2:15 a.m., she had asked them to bring her newborn son Jacob to her hospital room, and 30 minutes later she called again. When the nurse practitioner arrived, Jacob wasn’t with her.
Jacob had begun to turn blue, so he was given a pulse oximetry test. A simple device was slipped around his foot and it showed that the oxygen level in his blood was low – a possible indication of a critical congenital heart defect. An echocardiogram was scheduled.
“What just happened?” Thomas asked her husband when the nurse left.
Jacob was born with a rare condition in which extra tissue on one of his heart valves diverts oxygen-poor blood from his lungs and sends it out to his body. He was soon transferred from their hospital in Syracuse, N.Y., to a hospital in Rochester, N.Y., and a week later he underwent open-heart surgery.
Within hours of the procedure, Thomas heard a doctor say her son was perfect. The pulse-ox exam helped save Jacob’s life.
“The sooner critical congenital heart disease is detected, the better the chances of survival and the better the quality of life,” said pediatric cardiologist Dr. Harm Velvis of Albany, NY, a volunteer with the American Heart Association, said.
Less than a year later, Jacob and his family visited the New York State Capitol to help other children with similar heart defects. They were among many American Heart Association volunteers and other advocates across the state who spent countless hours urging passage of a bill requiring that all newborns receive a pulse-ox test before they are discharged from the hospital.
But the effort was not easy.
The bill passed readily in the Assembly. But as the legislative year’s end approached the measure still needed to move forward in the Senate. That’s when Julianne Hart, the American Heart Association’s government relations director for New York, called on the families of children born with congenital heart defects.
“We needed some superheroes,” Hart said. “Who better to illustrate the case than the children born with congenital heart defects?”
Out came American Heart Association “Heart Hero” capes. Jacob donned one as his family was the first to Albany for another round of visits to the Capitol, delivering petitions calling for passage of the bill to Senate Majority Leader Dean Skelos, R-Rockville Center.
Two-year-old Colton Berlin of Amsterdam, 20-month-old Aedan Conway of Delmar, and 4-year-old Jack James of Clifton Park and their families made the trip too. On June 10, their day began with live news coverage in front of the Capitol. The boys’ mothers recounted their stories, leaving hardly a dry eye in the room. Jack, a past Heart Hero of the Capital Region Heart Walk, took to the podium to ask senators to “pass this bill.”
As the group moved through the halls of government delivering petitions and meeting with their individual senators, the caped children drew smiles and charmed visitors. They were part of a larger statewide grassroots effort supporting the bill sponsored by state Assemblywoman Aileen Gunther, D-Forestburgh, and state Sen. Bill Larkin, R-Cornwall-on-Hudson.
Newspapers received letters to the editor; families called and emailed their legislators; and thousands took action through the American Heart Association’s “You’re the Cure” network. One of those was Patti Stone of Congers, whose 6-week-old daughter died from a congenital heart defect in 2002.
“I lost my baby to a congenital heart defect,” she said. “I worked hard to pass this law so that other babies might live.”
Finally, the measure passed the Senate. The network of volunteers then mobilized to urge Gov. Andrew Cuomo to sign it, and on Aug. 1, he did. The law goes into effect Jan. 27.
Just as when she had learned of Jacob’s heart defect, Thomas cried when she heard the news.
“The tears of fear and devastation have now turned into tears of joy for all of the babies’ lives that we will save,” Thomas wrote in an email to the families of children who had worked so hard to pass the law.
In September, Jacob, Colton, Aedan and Jack again donned their superhero capes and joined other families of children born with congenital heart defects at a Cardiac Kids “We Passed a Law” celebration at Riverview Orchards in Rexford, N.Y., where they were joined by Dr. Velvis and members of the Capital Region Advisory Board of the American Heart Association.
It’s a scene hoped for nationwide. There are now more than 20 states with pulse-ox laws, and the American Heart Association continues working to make it the law in all states.
“These wonderful volunteers know the heartache of going home with a newborn they believe was perfectly healthy, only to face a crisis in a few short days because of an undetected birth defect,” Hart said. “Their selfless work here at the Capitol slashes that risk for other expectant parents.”
Enjoying the toys and games at the BlueShield of Northeastern York’s HealthyZone Cruiser during the celebration picnic, Jack James paused periodically to pose a question he asks regularly of those he meets.
“I have a special heart,” Jack said. “Do you?”
Photo of the Thomas family courtesy of Julianne Hart. Photo of Sen. David Valesky and Jacob Thomas courtesy of Kristy Smorol.