We often share stories and features from patients and parents of children with CHD, but there is more to the CHD community. In this edition of our CHD Beat highlight series, we introduce you to Dr. Erica Sood, a cardiac psychologist in Delaware, who shares how she got started in medicine, how she connects to patients with CHD and their families, and her vision for the future of mental health support for CHD patients and families.
Conquering CHD: Tell us a little bit about your work, and what drew you to do it!
Dr. Sood: My work focuses on supporting the mental health needs of patients with CHD and their families. When I started my job as a cardiac psychologist in 2010, I was struck by all of the ways in which CHD affects the entire family. It became clear to me that there were many aspects of the CHD journey that could be traumatic, and yet at that time there was not a lot of focus on the mental health of patients and family members. As a cardiac psychologist, I felt that I could partner with patients and parents to really make a difference.
Conquering CHD: How has your work connected you to patients and families impacted by CHD?
Dr. Sood: My work has connected me to patients and families in so many ways! First, the clinical care that I provide connects me to patients and families at my local center. They put their trust in me to help their family through the CHD journey and then many give back to the community by helping other local CHD families. Second, my research focuses on the experiences and needs of families after a diagnosis of CHD. Patients and parents are involved as both partners (helping us conduct the research study) and participants (sharing their experiences and needs so that we can continue to learn from them). Third, my involvement with CHD organizations like Conquering CHD has connected me to patients and family members. I really value working in partnership with patients and family members to raise awareness about CHD and to improve mental health care for this community.
Conquering CHD: How can increased mental health support lead to better outcomes for patients and families?
Dr. Sood: Mental health is such an important part of health and wellbeing! Patients who struggle with mental health often have difficulties caring for their physical health. Also, mental health difficulties in parents can affect child development, including emotional and behavioral functioning. Mental health support is a necessary part of CHD care, and patients and family members who get the support that they need are better able to handle all of the stresses that come with CHD.
Conquering CHD: If you could tell patients and families about the importance of mental health when it comes to CHD care, what would it be?
Dr. Sood: I would tell patients that one of the best ways to support your physical health is to care for your mental health. And I would tell parents that one of the best ways to care for your child and help them thrive is to care for your own mental health.
Conquering CHD: How has the conversation around mental health changed since you first began? Where would you like to see the conversation about mental health and CHD head in the next 5 years?
It is so different! There seemed to be a lot more stigma around mental health when I first began, and most mental health support for CHD was reactive in response to an identified problem, not proactive. But now there seems to be an understanding that all patients and family members are affected by CHD and mental health care needs to be provided before there is a problem in a proactive and preventative way. I remember helping to lead a workshop in 2016 where we asked parents to work together to identify stressors and supports related to CHD and the emotional impact on the family.
Over the last six years I believe there has been much more discussion about these topics, both in professional and community settings.
In the next five years, I hope we get to the point where every family is prepared for the emotional impact of CHD and knows what emotional “red flags” to look for and how to find help and support. I hope that we have comprehensive emotional support programs that have been tested through research studies and can be used across hospitals to support as many families as possible.
Conquering CHD: What words of encouragement would you like to give to patients and families impacted by CHD?
Dr. Sood: You are not alone in how you feel. Many patients and family members have had similar experiences and feel the same way as you. Connect with other patients and family members when you feel ready. Look for opportunities to partner with other families, healthcare providers, and researchers to improve mental health care and outcomes. There is so much going on in this area and I am confident that together, we can really make a difference.
Conquering CHD: Any new and exciting research or upcoming news you’d like to share?
Dr. Sood: There are several research studies underway focused on developing and testing mental health support programs for patients or parents affected by CHD. Some of these start at the time of CHD diagnosis, often before the baby is even born. We know that mental health support needs to be offered early and often, including during pregnancy. Some of these mental health support programs were designed in partnership with patients and parents. To learn more about how researchers and clinicians have partnered with parents to design a prenatal support program called HEARTPrep, see this article in Journal of Patient Experience.
Conquering CHD: Tell us about your work with Conquering CHD.
Dr. Sood: I have been involved with Conquering CHD since 2015. I am on the Scientific Advisory Committee and the Research Committee. I love Conquering CHD’s focus on advocacy and on partnerships between patients, families, healthcare providers, and researchers. Conquering CHD has prioritized mental health for families affected by CHD since its inception and has accomplished a lot in a relatively short period of time!
Thank you to Dr. Sood for sharing your insights and for your continued collaboration and support of our mission to conquer the most common birth defect!
*Some responses have been edited for typos or for clarity.
Dr. Erica Sood, PhD, is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University. She received her PhD in Clinical Psychology from Temple University, and completed residency and fellowship in Pediatric Psychology at Nemours/duPont Hospital for Children. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program, and provides psychological consultation and therapy for children with congenital heart disease and their families. Dr. Sood also conducts research on neurodevelopmental outcomes, developmental care, and family psychosocial interventions for this patient population. She serves on the editorial board for Clinical Practice in Pediatric Psychology and is an active member of the Society of Pediatric Psychology’s Cardiology Special Interest Group and the Cardiac Neurodevelopmental Outcomes Collaborative. Dr. Sood provides supervision and mentorship to psychology fellows working within the Nemours Cardiac Center to promote psychologist involvement in the field of pediatric cardiology.
About CHD Beat – The congenital heart disease community is rich and varied, with members representing all walks of life and aspects of CHD, including patients, parents, family and friends, care team members, policymakers, and so many more. Conquering CHD is fortunate to have engagement from ALL levels within our organization. Our CHD Beat program is a social media series highlighting some of our most dedicated collaborators so our community can see all sides of our incredible community. We seek to celebrate those who offer collaboration, hope, and dedication to the CHD community and our organization.