CHD in newborn infants takes a toll on parents’ mental health

Parents of an infant born with congenital heart defects (CHD) are at increased risk of depression, with the risk peaking around the first 12 months and decreasing thereafter.

Researchers who conducted a nationwide cohort study in Japan found that risk difference for new-onset depression between parents whose newborn infants had CHD events (exposed group) and those whose babies did not have a CHD event (unexposed group) was as follows: 0.66 percentage points at 6 months, 0.81 percentage points at 12 months, 0.61 percentage points at 18 months, 0.25 percentage points at 24 months, −0.08 percentage points at 30 months, and −0.36 percentage points at 36 months. [Ann Epidemiol 2025;104:28-34]

This trend in parental depression risk was observed regardless of the hospitalization status of infants and CHD subtypes. However, parents of babies with a certain CHD subtype had a greater risk of depression than others.

Specifically, depression risk at 12 months was higher by 2.07 percentage points for parents of newborns with transposition of the great arteries (TGA) than for those whose babies did not have a CHD event. This risk difference was greater than that observed for parents of newborns with total anomalous pulmonary venous return (1.66 percentage points), atrioventricular septal defect (1.11 percentage points), or tetralogy of Fallot (0.77 percentage points).

For the study, the researchers conducted a target trial emulation framework using administrative data. They identified 4,520 individuals (mean age 35.53 years, 93.1 percent male), with 2,260 each in the exposed and unexposed groups. Individuals in the exposed group were matched to those in the unexposed group based on the most recent age, gender, income level, and the birth date (month and year) of the infant.

Parental disease histories were similar in the exposed and unexposed group, including diabetes (4.8 percent vs 4.7 percent), hypertension (4.3 percent vs 3.9 percent), and cardiovascular disease (1.6 percent vs 1.1 percent). A total of 99 individuals (2.2 percent) received a diagnosis of depression over a median follow-up of 35 months.

First year of life critical

Lead study author Toshiaki Komura, a PhD student in Social and Behavioral Sciences at Harvard T.H. Chan School of Public Health in Boston, Massachusetts, US, proposed several mechanisms that could explain the trajectory of depression risk observed among parents of newborns with CHD.

In infants with CHD, early-life outcome is generally determined during the first year of life, Komura noted. This period is when mortality is highest and when major surgery is often completed, especially in severe CHD. [J Am Heart Assoc 2016;5:e002846; Pediatrics 2013;131:e1502-e1508]

“During this time, parents might overcome emotional struggles including, shock, fear, and grief, and enter a phase of acceptance of their child’s conditions, thus achieving stability in mental health in the later period,” Komura explained. [Br J Health Psychol 2024;29:351-378]

Also, most babies with CHD with a favourable early-life outcome eventually “catch up” with their non-CHD peers and reach the same levels of growth and development as they get older, he added. “For example, the Z-score difference between the body weight of infants with and without CHD is most remarkable at 4 months of age, and the difference narrows down afterward… Thus, such growth in children after CHD events could moderate psychological burdens on parents,” [Pediatrics 2013;131:e236-e242; J Pediatr 2024;267:113901]

As for the seemingly larger effect of the TGA subtype on the risk of parental depression, Komura speculated that this difference might reflect the elevated risks of death and complications associated with TGA.

“In developed countries, including Japan, most infants with TGA undergo arterial switch operation within 1–2 weeks of birth, which is one of the most challenging procedures in paediatric cardiac surgery and carries a higher risk of death and complications than other CHD surgeries, including tetralogy of Fallot and atrioventricular septal defect,” he said. “As such, postoperative in-hospital mortality rate is between 4.4 percent and 6.5 percent for TGA but only 1.3 percent for tetralogy of Fallot in Japan.” [Eur J Cardiothorac Surg 2017;51;301-307; J Thorac Cardiovasc Surg 2017;154;1047-1051; J Thorac Cardiovasc Surg 2009;138:1139-1153; World J Pedia Congenit Heart Surg 2021;12:312-319]

Mental health support needed

In light of the findings, Komura stressed the importance of providing mental health support for parents of newborn infants with CHD not only during hospitalization but also after discharge to home.

“Although the average postoperative hospital stay for neonates with severe CHD is approximately 1.5 months in Japan, the current study showed that parents experience elevated risks for depression throughout the first year of [their children’s] life,” he said.

It should also be noted that the parents’ mental health plays out in the later development of the children.

“Parental mental disorders are not only health issues of their own but also a key determinant of the caregiving environment for children which affects their later development,” according to Komura. This is why “a timely and household-level intervention of mental support and policy-level enhancement of social welfare to mitigate caregiving burden” are not just a matter of parental wellness, but also serve to provide a “better environment for the development of the children.”

Komura called for additional research to determine factors that contribute to psychological burden in parents whose babies have CHD and establish an effective monitoring framework.