When doctors diagnose infants with a high-risk congenital heart disease, they should not only treat the child but provide support for the parents as well, new research suggests.  

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Mothers of babies prenatally diagnosed with single-ventricle disease — which has the highest risk of death among congenital heart diseases — experience significant depression and anxiety, according to a pilot study led by University of Michigan C.S. Mott Children's Hospital.

But early palliative care for these mothers can decrease stress, improve coping strategies and strengthen family relationships, according to findings published in Cardiology in the Young.

"Single-ventricle heart disease is a serious, complex condition usually detected before the baby's birth. This disease means invasive procedures, long hospitalizations, surgery, and a lot of risks and uncertainty along the way. It's a tremendous load for families to bear," says senior author Ranjit Aiyagari, M.D., a pediatric cardiologist at Mott.

"Parents faced with this kind of diagnosis are under an enormous amount of stress, with considerable anxiety surrounding their child's lifelong illness and the future. We found that palliative care interventions played a key role in alleviating this anxiety and improving coping mechanisms and communication among families."

Strategies and support

For the study, 40 mothers of infants prenatally diagnosed with single-ventricle heart disease completed surveys during pregnancy that measured depression, anxiety, coping and quality of life and again after their babies were discharged from the hospital after undergoing heart surgery.

Surveys found these mothers had about twice the level of anxiety as the general population at baseline, with nearly half of the women qualifying as clinically depressed.

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Each participant in the study then received personal interventions that included a 45-minute meeting with Mott's pediatric palliative care team. The meeting involved counseling and open dialogue about fears, hopes and expectations.

Families were also taught coping strategies and connected with support groups and other families in similar situations.

"Serious, potentially life-limiting illness in a child affects everyone involved in the child's life. The pediatric palliative care team's biggest goal is to support families in a way that positively affects their child's quality of life," says Kenneth Pituch, M.D., director of the Mott pediatric palliative care program and a study co-author.

"Palliative care specialists do not counsel families on the disease itself or talk through medical details," Pituch adds. "They focus on what the family needs through this journey — whether it's strategies to manage the emotional ups and downs, help communicating goals to providers or extending their support network.

"Families are often overwhelmed and need support through all of their feelings, guidance in having open and honest discussions and realizing that they are not alone."

Expanding intervention care

Congenital heart defects are the most common type of birth defect, with nearly 1 in 100 babies born with a heart defect in the U.S. each year.

Children with single-ventricle disease only have one working ventricle. Most would not be able to survive the first year of life without surgery. 

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Aiyagari says future studies will look at what specific elements of palliative care are most beneficial to families and also expand research to other pediatric heart conditions and how diagnoses affect other family members in addition to mothers.

"Our study suggests that a fairly simple intervention can have a major positive impact on families of children with high-risk congenital heart disease," he says. "Health care providers must continue to consider all possible interventions that can help the whole family."

Haley Hancock, M.D., a former pediatric cardiology fellow at Mott, was the study's lead author. Hancock is currently an assistant professor at Children's Mercy in Kansas City.