Parents of children with “critical” congenital heart defects (CCHD)—defects that require at least one surgery—often breathe a sigh of relief when the surgery is over and the prognosis is good. Close friends and family often share the relief that the parents can just get on with the normal activities of parenting. According to newly published research, that, apparently, is not the case.
The Journal of the American Heart Association revealed today that parents of children with CCHD are at high risk for mental health problems, particularly post-traumatic stress disorder (PTSD), anxiety, and depression. The risk is higher if the child experiences extensive medical treatments requiring time in the neonatal intensive unit (NICU). Generally, between 10 and 15 percent of women experience postpartum depression. That percentage can jump to 39 percent for women whose child is admitted to a NICU.
Congenital heart defects are the most common birth defect in the country, according to the journal article, affecting 1 percent (40,000) births annually. In spite of the fact that a quarter of the cases require surgery, recent medical advances contribute to impressive survival rates with the children enjoying typical life expectancies.
What has not kept pace is health professionals’ understanding of the impact that congenital heart defects have on the parents’ mental health. Reviewing published data from 10 countries, researchers found the following:
· Up to 30 percent of parents had symptoms consistent with PTSD, compared to 3.5 percent in the general U.S. population;
· More than 80 of parents exhibited symptoms of trauma; and
· Between 30 and 80 percent of parents reported depression, anxiety or both.
The long-term effects of parental mental health on the cognitive, overall health, and behavioral status of their children is undisputed. If parents’ mental health problems are untreated, they can adversely affect their ability to care for their children months, or even years, after surgery. Essentially, if parents have mental health problems, the children will likely have problems learning and suffer setbacks and consequences to their health and behavior.
Other medical specialties, such as pediatric oncology (childhood cancer), routinely assess the mental health status of parents as a standard practice of patient care. Appropriate coordinated care is then provided or recommended. This new study is the first to draw attention to the effect of pediatric cardiology on mental health status of parents.
“There is a real need for additional research on the severity, the course, and the persistence of mental health problems over time,” said Sarah Woolf-King, Ph.D., M.P.H., senior study author and assistant professor in the psychology department at Syracuse University in New York. She understands firsthand because her son, now age 4, was born with a congenital heart defect and had open heart surgery at 9 weeks old
“It was one of the loneliest, most terrifying times of my life,” she said.
As with any critically ill child, the mental health of the parents is often taxed by coping with their children’s medical appointments, cardiac procedures, long hospital stays, digestive or feeding issues and increased risk for major respiratory illnesses—all of which can amount to considerable financial, emotional and familial costs.
For reasons that are not fully understood, mothers are disproportionately affected. Woolf-King explained the answer may be two-fold:
“One, the first surgery typically occurs during the mother’s postpartum period when the new mother is already at increased risk for mental health issues and, two, the care of a sick child can disproportionately fall on the mother. “