Around the world, one in every 100 children is born with a potentially life-threatening heart condition.
In Australia, congenital heart disease is a leading cause of disease-related disability in children, and the leading cause of death in babies under 12 months old.
According to Associate Professor Nadine Kasparian, medical psychology researcher at UNSW, 45% of babies who need heart surgery are diagnosed through fetal screening during pregnancy – and this is associated with increased rates of antenatal and postnatal depression and anxiety in parents.
Kasparian, who is head of psychology at the Heart Centre for Children in Sydney, is characterising the factors that contribute to these enhanced psychological risks, and developing innovative, evidence-based interventions to improve health outcomes for children and families.
“Babies with heart disease can experience a range of uncommon and painful events, such as surgeries and invasive medical procedures, and limited interaction with their parents during the newborn period.
“These experiences can have profound consequences for the developing child, with early life experiences shaping brain development, as well as the body’s immune system and response to stress,” she says.
Kasparian is leading a world-first study, investigating whether high levels of stress in parents during pregnancy – after fetal cardiac diagnosis – influences infant development.
Her team is looking at biomarkers of stress in parents following diagnosis, and across the first year of their baby’s life, using validated techniques to study the child’s developmental progress.
This involves looking at the interactions between mother and child, evaluating the child’s language and motor skills, their attachment to caregivers, and the patterns of stress reactivity between mother and child, which can be an indicator of future health outcomes.
“We’re trying to build a picture of how adverse, as well as positive, early-life experiences can change brain development and behaviour. This is important to understand, particularly for children with serious illnesses, who may have a heightened vulnerability to stress,” says Kasparian.
“By identifying patterns and predictors of risk, we can intervene very early with strategies to help parents support their young children and each other.”
Working at the intersection of medicine and psychology, one of Kasparian’s major contributions has been changing the culture of care in paediatrics, collaborating with clinicians to build teams that emphasise the importance of psychological care for families.
“It’s taken for granted that psychological support is afforded to families after such a serious diagnosis,” she says. “But in 2008 when I started this work, families had very little access to psychological care,” she says.
“We’ve been able to work with teams to completely change that.”
Kasparian established the Asia Pacific Region’s first integrated psychology research program and clinical service dedicated to childhood heart disease and in 2014, her team was awarded a National Health and Medical Research Council grant to trial routine psychosocial assessment for every family in NSW following cardiac diagnosis in the perinatal period.