To someone unfamiliar with Children’s Heart Foundation President Betsy Peterson, the “Did you know” questions she asks when she talks about the organization might sound like she is simply a well-informed volunteer.
She throws out such questions as: Did you know that congenital heart defects are the No. 1 birth defect in America, that 1 of every 115 babies born in America has a congenital heart defect, that in most cases the cause of congenital heart defects is not known but that little money is going to research? Did you know that no national organization raised funds for congenital heart research before the founding of the Children’s Heart Foundation in June 1996?
That last question is the kicker. Peterson is not just the foundation’s president but also its founder. To her, the did-you-know questions are not a collection of facts but a personal tragedy.
After eight years of watching son Sam romp with other youngsters despite complex heart defects and having a pacemaker, Peterson and husband Steve anticipated that Sam would continue to survive and even lead a normal life.
But in December 1994, while Sam and his 2nd-grade classmates at Highland Park’s Ravinia Elementary School were enjoying the last day of school before Christmas vacation, he collapsed. Sam died in January 1995 of multiple organ failure as a result of the heart-related collapse, according to Peterson.
“He had a complete cardiovascular workup the week before he collapsed,” Peterson said recently.
She is in the midst of planning a major foundation benefit party to be given at the Field Museum of Natural History after the museum’s regular hours on Friday. Last year the benefit, held at the Chicago Children’s Museum on Navy Pier, drew 800 children and adults.
“It was a wonderful family event, but we immediately outgrew the space,” Peterson said.
As she talks about benefit plans more than two years after Sam’s death, her voice is still heavy with disbelief.
“He was so active. No one, unless it was someone who really knew him, would know he had a problem. He loved sports. Soccer was his big love. The only way you could tell there was something different was that he couldn’t always keep up. His heart had to work twice as hard as others. But he monitored himself well and stopped when he was tired,” she said.
The family, which included daughter Hallie, then 5, left later that winter for Singapore, where Steve was working in conjunction with his job as communications consultant for Lincolnshire-based Hewitt Associates. When they returned to the North Shore a year later, this time to Winnetka, Betsy Peterson felt compelled to form an organization that would try to prevent more cases like Sam’s. Seed money for the foundation came from the approximately $4,000 that had accumulated in a bank account as a memorial fund.
“Hallie does not have a heart defect,” Peterson said. “It’s not known why a child is born with a heart defect. Doctors cannot point to a gene or something and specifically say this is what caused it — not yet.”
But the money raised by the foundation (more than $100,000 last year), which is disbursed as grants by a medical advisory board composed of some of the leading pediatric cardiologists in the world, will fund research into the cause. Grants also will go to research on how to correct defects and how people with congenital heart defects are affected by heart disease as they grow older.
There is a great need for funding of such research, according to Medical Advisory Board Chairman Dr. Thomas J. Weigel, assistant professor of clinical pediatrics at Northwestern University Medical School in Chicago.
“Funding for research into congenital heart defects has been reduced dramatically in the past decade from the government. And the American Heart Association has been focusing on adult heart disease,” Weigel said.
“But there is research waiting to be funded. What we’re looking at runs the gamut from how to prevent congenital heart defects to how to treat and protect the heart during treatment and studies that follow adults who do survive. We’re right on time,” he said.
Weigel, who had worked closely with the Petersons on Sam’s problems, continued to work with them to pull together a top-notch advisory board.
“All grant proposals get peer reviews,” he said. “We asked the leaders in the field of pediatric cardiology. We never got a single no. The response from the medical community has been wonderful.”
The 16-member board sounds like a who’s who in pediatric cardiology. It includes, among others, Drs. James Lock at Boston Children’s Hospital; Hovald Helseth and Amarjit Singh at the Children’s Heart Clinic in Minneapolis; Asuncion Reloza, president of the Philippine Society of Pediatric Cardiology in Manila; and Charles Mullins at Texas Children’s Hospital in Houston.
Peterson also pulled together an operating board that included friends; people with expertise in law, finance and marketing; and people whose children have heart defects.
“God has been gracious to me by putting people in my path who could help me,” she said. “Everyone said yes. I could not have gotten the foundation off the ground without them.” The foundation’s board, which alternates monthly meetings in Chicago and the suburbs, currently has 24 active members, according to Peterson.
They include benefit chairwoman Lori Hill of Highland Park, who has three children, one with a congenital heart defect.
When her 10-year-old daughter, Kelsey, was born with a right ventricle problem, she and her husband, Dr. Mark Hill, a general surgeon, found Dr. James Lock in Boston to operate. Lock had invented a mechanism that was crucial to some of Kelsey’s procedures, according to Hill.
“I wanted to be part of the foundation because it centers on research,” Hill said. “My daughter wouldn’t be alive if not for research that was being done. It’s important to continue this cutting edge research.”
Other board members, including Leslie Neilan of Highland Park, said yes because they were greatly affected by Sam’s life and death. Neilan’s 9-year-old son, Sean, was among Sam’s good friends.
“Money is needed for research into congenital heart defects. . . . Now that money will be going to that, maybe fewer children will die from it. Sam was such a special child. It was so unfair,” Neilan said. “Sam had had open-heart surgery and had a pacemaker. But Sam was all boy. I’m driven for this. I don’t want Sam to have died in vain.”
———-
For more information on the Children’s Heart Foundation or the benefit, call the Petersons at 847-441-9202.
