Sarah Woolf-King’s son Charlie was born with holes in his heart that required open-heart surgery when he was just 9 weeks old.
The terrifying experience created stress, anxiety and isolation that sent the clinical psychologist online to message boards and Facebook groups looking to connect with other moms dealing with similar circumstances.
Study on parents of children with critical congenital heart defects
She found she wasn’t alone.
“Over and over I’d read these stories of moms posting things that were similar to my own experience, describing what I knew to be symptoms of trauma and depression and anxiety,” said Woolf-King, Ph.D., an assistant professor in the psychology department at Syracuse University in New York.
Woolf-King also realized that as a mother and a researcher who spent 10 years studying the intersection between psychology and health, she was in a unique position to study the issue further in hopes of helping other parents.
The result is a new study that found parents of children with serious congenital heart defects may be at risk of mental health problems such as post-traumatic stress disorder, anxiety and depression.
Researchers found that mothers are disproportionately affected.
“We’re not 100 percent clear about why,” Woolf-King said. “But we think it has to do with, one, the first surgery typically occurs in the postpartum period when mothers are already at increased risk for mental health issues and, two, the care of the sick child can disproportionately fall on the mother.”
The study was published recently in Journal of the American Heart Association, the open-access journal of the American Heart Association/American Stroke Association.
The research is a systematic review of data from 10 countries, but also very personal to Woolf-King.
While Charlie rapidly recovered from the surgery to repair his defects (known as a large ventricular septal defect and patent ductus arteriosis), her emotional recovery was much slower.
“It wasn’t until he was fully recovered physically that I began to notice how much I was still living in a state of chronic anxiety,” she said. “The hypervigilance that was adaptive in the period before his surgery was having a negative impact on my ability to enjoy my life and my son. I ended up seeking mental health care, which I was fortunate enough to have access to, and it was a major source of healing for me.”
Healing for her meant becoming more joyful and less fearful in her parenting of Charlie, now a 4-year-old she describes as energetic, resilient, curious, affectionate, hilarious and healthy.
“He currently has no activity restrictions, and while he’ll continue to be monitored for life, at this time his beautiful scar is the only reminder of his heart defects,” she said.
Woolf-King, whose research had been solely focused on HIV and substance use before her son’s surgery, said she and her research team plan to continue studying parents of children with heart defects. Her research team represents the fields of nursing, pediatric cardiology, medical anthropology, and developmental and health psychology.
For future studies, the team is analyzing data to understand when and how to best intervene to help parents and providers of pediatric cardiac care.
The team also plans to apply for additional funding to develop and pilot an integrated mental health intervention that parents can access in conjunction with their child’s medical treatment.
“After my son’s surgery, I applied for a small grant from the Hellman Foundation that allowed me to develop this new line of research,” Woolf-King said, “and I hope to make it a larger part of what I do over time.”
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