After her son died at age 8 of complications from congenital heart defects, Betsy Peterson poured her grief into raising awareness and funding research, creating a national nonprofit to help other families.

Peterson learned her son, Sam, had multiple congenital heart defects shortly after he was born by emergency C-section in 1986.

Sam had four critical CHDs that made it difficult for his blood to get enough oxygen to fuel the rest of his body. He had his first open-heart surgery when he was just 3 days old. His second came at 10 months, along with a “corrective” surgery at age 3.

But after that surgery, Sam experienced major complications. His heart’s upper and lower chambers weren’t signaling the heart to pump, causing it to stop. It resumed normal pumping after a few days, but the complication occurred again after he was home for a few days, requiring resuscitation. Doctors implanted a pacemaker, but counseled the family that there was little research available and that Sam’s future was uncertain.

“I knew then that every day was a miracle and that if it hadn’t been for research from past generations, he would not have lived more than a day when he was born,” Peterson said. “I was incredibly grateful for what the doctors were able to do for him and his particular abnormality.”

CHDs are the most common birth defect in the United States, affecting eight out of 1,000 births, or more than 35,000 babies annually.

Some heart defects are minor and an individual may never exhibit symptoms. Others, like Sam’s, require detection and intervention within the first days of life.

SamPeterson-3 mos.beforedeath

After getting his pacemaker, Sam was able to live a relatively normal life in the Chicago suburbs. But, Peterson still met with school officials, coaches and the local fire department to make sure they knew to perform CPR immediately if he ever collapsed again. Sam played basketball, baseball and soccer, making sure to sit out and rest if he was getting overtired.

“He looked and acted like a normal kid,” she said.

At 8, Sam underwent a full cardiac workup in preparation for a move to Singapore, where his dad, Steve, had a new job assignment. All looked well, but on Dec. 22, 1994, Sam collapsed and was airlifted to Children’s Memorial (now Lurie Children’s) Hospital of Chicago. He died 13 days later from multiple organ failure.

“When Sam died, it was like you’d cut off one of my limbs,” Peterson said. “I still feel him and mourn him, and I know he’s still with me in spirit, but there is a hole that can never really be filled.”

After Sam died, Peterson learned there wasn’t an organization dedicated to raising awareness and research funds for CHDs.

Eager to find a way to change that, the family donated Sam’s heart to the F.S. Idriss Cardiac Registry for future research and directed donations to the hospital for funding.

As loved ones grieved, a friend from high school suggested Peterson use her background in public relations and fundraising to start a foundation. Sam’s cardiologist and heart surgeon also encouraged Peterson and offered to help.

When the family returned to Chicago from Singapore a year later in 1996, Peterson founded The Children’s Heart Foundation. The nonprofit has grown into a national organization directed by a board filled with families of kids with congenital heart defects.

Betsy and Steve Peterson, with their daugther Hallie and son Sam.

Betsy and Steve Peterson, with their daugther Hallie and son Sam.

“I never wanted the foundation to be about Sam, I wanted it to be for all congenital heart families and I wanted it to grow,” Peterson said. In its first year, the organization raised $90,000, under its $100,000 goal, but enough to fund a small research project. They raised $200,000 the following year.

Now in its 20th year, CHF has independently funded 67 research projects with nearly $8 million. In addition, CHF and the American Heart Association have collaboratively funded seven research projects with nearly $800,000 through the Congenital Heart Defect Research Awards.

“Now, because of research, more infants born with CHDs survive to adulthood,” Peterson said. “That wasn’t true when my son was born.”

Peterson, who continues to work as a CHF executive board member and in advocacy, urges parents to get more detailed screenings during pregnancy. She also advocates for pulse oximetry readings after babies are born to help identify CHDs as early as possible. And she’s working to raise awareness about better long-term care, as more children born with CHDs today live into adulthood.

Peterson said the foundation played an important role in helping her deal with losing Sam, and that he continues to provide inspiration.

“He keeps me fighting for other heart kids and their families,” she said. “We need to work together to build a collective voice. We can do so much more together than we can alone.”