"When a Child is Born with a Heart Defect, the Whole Family is Affected"
Every year, nearly 2000 children are born with congenital heart defects in Sweden – a diagnosis that turns life upside down for the entire family. Despite medical advancements and improved survival rates, the diagnosis often means a lifelong journey filled with worry, adjustments, and regular medical visits. Ewa-Lena Bratt, Professor of Nursing at the University of Gothenburg, shares insights into how life changes when a child is born with a heart defect and the role research plays in improving care.
Approximately 8 out of 1000 children in Sweden are born with a heart defect. Survival into adulthood has increased significantly since the 1980s, from around 85 percent to today’s 97 percent. However, for many, it becomes a lifelong condition to manage.
"When a child is born with a heart defect, the entire family is affected on multiple levels – emotionally, practically, and socially," says Ewa-Lena Bratt. "Parents often experience anxiety and stress, both about the immediate, sometimes critical and life-threatening situation, but also about the child's future health and life. At the same time, siblings might feel overlooked or anxious. Many families must adjust their daily lives, balancing frequent medical visits with work and other responsibilities."
Support for Lifelong Responsibility
So, what can be done to support these families? According to Ewa-Lena Bratt, it is crucial to provide continuous, high-quality medical care from a multidisciplinary team of specialists, including pediatric cardiologists and nurses, as well as access to counselors, psychologists, and support groups to help the family cope with stress and uncertainty. Practical support, such as financial assistance, tailored preschool or school solutions, and flexible work options for parents, is equally important.
As the child grows older, preparing for the transition from pediatric to adult care becomes essential – a critical phase for many young individuals with heart defects. Eventually, parents need to hand over responsibility to their child, who must learn to manage the condition independently. "Support is crucial to help them feel confident in taking ownership of their condition, participating in their care, understanding their diagnosis, and acquiring the skills necessary for self-care throughout life," explains Bratt.
Many adolescents struggle to manage their care independently, needing support to understand their diagnosis, medications, and self-care routines. In some cases, they encounter healthcare professionals unfamiliar with congenital heart defects
The Transition to Adult Care – A Critical Phase
Ewa-Lena Bratt's research focuses on the transition from pediatric to adult healthcare – a shift that presents challenges for both patients and healthcare providers.
"Some young people find the transition overwhelming," she says. "They move from a familiar, family-centered pediatric environment to an adult healthcare system where they are expected to take greater responsibility, which many feel unprepared for. Additionally, the care they receive can feel more fragmented."
Many adolescents struggle to manage their care independently, needing support to understand their diagnosis, medications, and self-care routines. In some cases, they encounter healthcare professionals unfamiliar with congenital heart defects unless they are seen at a specialist adult congenital heart disease (ACHD) clinic. Feeling uncertain about new healthcare providers can increase the risk of losing contact with medical services, potentially causing long-term health complications.
"Structured transition programs are essential," Bratt emphasizes. "These programs allow young patients to gradually assume more responsibility while still having access to professionals experienced with congenital heart defects."
Ultimately, I hope the research will lead to longer, healthier, and more independent lives for individuals with congenital heart defects. We want them to feel confident in their care and optimistic about their future
Research Supporting People with Heart Conditions Throughout Life
"I hope our research contributes to a better understanding of how to improve the care and quality of life for children with congenital heart defects – both in the short and long term," says Ewa-Lena Bratt. "Our goal is to integrate structured transition programs into routine care, providing young patients with personalized guidance as they move from pediatric to adult services. We also want to prepare adult healthcare providers to meet these young individuals' specific needs."
Ultimately, Bratt hopes the research will lead to longer, healthier, and more independent lives for individuals with congenital heart defects. "We want them to feel confident in their care and optimistic about their future," she concludes.
