New UBC research highlights importance of ensuring children and families receive the care and resources they need.

A child and its parent hold their hands together to form a heart while they touch noses in the background.

Children born to mothers with congenital heart disease are more likely to experience developmental challenges by the time they start school, according to a new study led by researchers at the University of British Columbia and the Karolinska Institutet in Sweden.

Published today in PLOS Medicine, the study found that these children were 28 per cent more likely to be developmentally vulnerable at kindergarten age, with greater challenges related to physical health and well-being, language and communication, and emotional and social development.

Congenital heart disease — a group of structural heart defects present at birth—affects nearly one per cent of babies. Advances in cardiac care mean that more than 90 per cent of children born with congenital heart disease now survive into adulthood and many go on to have children of their own. While previous research has shown these pregnancies carry a higher risk of complications such as preterm birth, less has been known about the children’s longer-term developmental outcomes.

Dr. Anne Gadermann

“Children’s early development shapes their learning, health and well-being across the life course,” says Dr. Anne Gadermann, associate professor at the Human Early Learning Partnership and School of Population and Public Health in UBC’s Faculty of Medicine. “Identifying children who may need extra support when they begin school provides an opportunity for timely interventions that can improve long-term outcomes. Our findings highlight the importance of early developmental monitoring for children born to mothers with congenital heart disease, alongside optimized preconception and perinatal care.”

Supporting children and families early

For the study, the researchers analyzed data from more than 250,000 children born in British Columbia between 1995 and 2016, including 456 whose mothers were born with congenital heart disease. Children’s development was assessed by teachers during their first year of kindergarten using a standardized tool that measures five areas of early childhood development: physical health and well-being, social competence, emotional maturity, language and cognitive development, and communication skills.

Children were considered developmentally vulnerable if they scored in the lowest 10 per cent in at least two of the five developmental domains. Overall, children whose mothers had congenital heart disease were 28 per cent more likely to meet that definition than children whose mothers did not have the condition. The association was even stronger among children whose mothers had more severe forms of congenital heart disease.

Dr. Zakir Hossin

“As more women born with congenital heart disease are surviving into adulthood and becoming mothers, understanding the long-term health and development of their children is an increasing public health priority,” said first author Dr. Zakir Hossin, who conducted the study while completing a postdoctoral fellowship at UBC and is now a researcher at the Karolinska Institutet. “Our study suggests that the children of mothers with congenital heart disease may experience a higher risk of developmental challenges when they start school, highlighting the importance for early developmental monitoring and support following prenatal exposure to maternal congenital heart disease.”

The researchers emphasize that developmental vulnerability does not mean a child has a diagnosed developmental disorder. Rather, it identifies children who may be at greater risk of experiencing challenges and may benefit from additional supports and resources.

“This study is not showing that women with congenital heart disease should not have children,” said senior author Dr. Neda Razaz, a researcher at the Karolinska Institutet. “Rather, it highlights the importance of providing extra support and follow-up before, during and after pregnancy, so that children and families can get any help they may need as early as possible.”

The researchers say further studies are needed to better understand the biological, social and environmental factors that may contribute to these developmental differences and to identify interventions that could improve outcomes for children and families.





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