Congenital heart disease or ‘CHD’ is one of the most common diseases babies are born with. It affects about 40,000 newborns in the United States every year and over the course of their lives, many of these children and adults will need life-saving heart surgery and intensive medical care. It is not surprising then that alongside these medical challenges, many also face psychological challenges.
Over the past 40 years, we have seen remarkable improvements in medical and surgical care for children with congenital heart disease. With these improvements, doctors have come to see the broader consequences of this disease, including the ways it can influence child and family mental health and wellbeing.
About 1 in 4 children with CHD experience difficulties with intense fear, worry or sadness. Family members, including parents and siblings, also experience these difficulties and yet there are still big gaps in access to mental health care. This is why Cincinnati Children’s is building a one-of-a-kind clinical program dedicated to helping families navigate through times of uncertainty and regain a sense of hope and control. The program, led by Nadine Kasparian, Ph.D., is scheduled to open later this year and will provide specialized psychological care for people of all ages with congenital heart disease.
“Hearing the words, ‘your baby has heart disease’ can be a devastating moment for families. It is the beginning of a long journey, not only for the child, but for their parents, grandparents, brothers and sisters,” says Dr. Kasparian, who is a Professor of Pediatrics and Director of Cincinnati Children’s Center for Heart Disease and Mental Health. “Our goal is to support families through diagnosis, treatment and transitions, so they don’t feel so alone and afraid.”
Dr. Kasparian says it is common for people with serious illness, like CHD, to experience emotional difficulties. Her research shows that without the right support and treatment, children with congenital heart disease and their parents are more likely to develop anxiety, depression, and even post-traumatic stress.
“It takes a lot of courage and resilience. Many families rightly have a sense of pride in what they have been able to face during times of illness and the ways in which it has brought them closer together. It is rewarding to see many children and families thrive in the face of adversity, and even small victories are incredibly important”, says Kasparian, who is originally from Australia, where she pioneered mental health services for families of children with heart disease.
The new program will bring together psychologists, child life therapists, social workers, doctors and nurses from across the Heart Institute, the Division of Behavioral Medicine and Clinical Psychology, and the hospital to provide the best possible care.
“The fact that we will all be working together to make mental health care a normal, routine part of heart care is really something special,” says Kasparian.
And parents of children with congenital heart disease think so too, calling this new clinic “ a game-changer”.
Indeed, the center’s long-term goal is to completely transform mental health outcomes in childhood heart disease.
“We will be working closely with other specialized programs across the Heart Institute, including our Fetal Heart Program, Neurodevelopmental and Educational Clinic, and Adult Congenital Heart Disease Program, to ensure that mental health care is accessible, at the right time, in the right place, so that patients and families have every opportunity to thrive and live their most happy and fulfilling lives.”
Cincinnati’s Children’s is located at 3333 Burnet Avenue, Cincinnati, OH 45229. For more information, call 513-636-4200 or visit cincinnatichildrens.org/heart.