Legacy Of Love Is Helping Children With CHDsLegacy of love is helping children with CHDs
After her son died at age 8 from complications from congenital heart defects, Betsy Peterson poured her grief into creating a national nonprofit organization, The Children’s Heart Foundation (CHF), dedicated to raising awareness and funding research for congenital heart defects (CHDs).
Peterson learned that her son Sam had multiple congenital heart defects (CHDs) on the day he was born, Sept. 27, 1986. Shortly after his birth via an emergency C-section, Sam was taken to the ICU.
Sam had four critical CHDs that made it difficult for his blood to get enough oxygen to fuel the rest of his body and 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 3 years.
But after his surgery, Sam experienced major complications. His heart’s upper and lower chambers weren’t signaling the heart to pump, causing it to stop. His heart resumed normal pumping after a few days, but the condition occurred again after he was home for a few days, requiring resuscitation. Doctors implanted a pacemaker, but cautioned the family that Sam’s future was uncertain because there hadn’t been much research on kids like him.
“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, with about 40,000 babies born with a CHD in the United States each year - that equates to about one child every 15 minutes. The leading killer of infants with birth defects, CHDs range in severity from simple holes or murmurs to severe malformations, such as the complete absence of one or more chambers or valves.
Some heart defects are minor and an individual may never exhibit symptoms. Others, like the one Sam had, require detection and intervention within the first days of life.
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 had a new job assignment. All looked well, but on Dec. 22, 1994, Betsy got a call that Sam had collapsed and he 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.”
Only after Sam died did Peterson learn that CHDs are the most common type of birth defect and she was even more surprised to find that there wasn’t an organization dedicated to raising awareness and funding for research.
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 to fund research.
As the family and others whose lives Sam touched grieved, a friend from high school suggested Peterson use her background in public relations and fund raising 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 (CHF). The organization grew and evolved, from a working board filled with friends of the Peterson family to a national organization directed by a board filled with families of kids with congenital heart defects.
“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 their first year, the organization raised $90,000. That was under their $100,000 goal, but enough to fund a small research project. They raised $200,000 the following year.
Now in their 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, bringing CHF's total amount funded to over $8.4 million.
The American Heart Association/American Stroke Association & CHF began their collaboration in 2014 to provide $2.5 million in grant funding for congenital heart defect research through 2016. The work was expanded in 2015 with a goal to provide an additional $20 million through June 2021.
“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 and pulse oximetry readings after babies are born to identify CHDs as early as possible. She’s also working to raise awareness for better long-term care, as children with CHDs 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.”
This month, The Children’s Heart Foundation (CHF) is celebrating 20 years of funding congenital heart defect (CHD) research. To learn more about CHF, visit www.childrensheartfoundation.org.