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 Rita Higgins, a Registered Nurse and parent of a young adult with CHD, who shares how her daughter’s CHD journey led her to becoming a nurse, how she advocates for patients with CHD and their families, and her vision for the future of CHD care and support for CHD patients and families.
Conquering CHD: Tell us a little bit about your work, and what drew you to do it!
Ms. Higgins: I have what I like to call a “windy” career path. Neither of my parents finished high school, and college was never really on my radar. After I graduated I did a few things to be able to pay the bills but none of it really excited me. I ended up landing a position as a financial advisor with a company that was willing to train me even though I didn’t have a degree. I got all of my financial licenses to be able to sell mutual funds, life insurance, etc. Along the way I realized that if I ever wanted to do something different I would need a college degree so I started going to college in the evenings. Trinity, my daughter with CHD, was born in 2002 when I was about 75% done so it was difficult towards the end. I graduated with a bachelor’s degree in business in 2004, and was presented with an opportunity for a pharmaceutical sales position. I worked in pharmaceutical and medical device sales for the next 7 years. My last position was eliminated and I decided to take a step back to think about what I wanted my future to look like.
Over the years I had become involved in parent feedback groups at Children’s Hospital of Wisconsin as a result of Trinity’s care and hospital stays. I started to get known as a parent who was willing to give feedback and offer ideas, so the invitations to participate kept coming. I was on the Family Advisory Committee, did work with the Health Literacy Committee, and participated in the Peer to Peer group. I realized I was most happy when it involved healthcare. I decided to take the opportunity to go back to school for nursing, and I passed my NCLEX exam in May of 2012. At the time I had been serving as a family representative on a committee overseeing the Epic electronic health record implementation at Children’s Hospital of Wisconsin, and I ended up being hired by the hospital as a trainer. I held several positions over the years (some at the same time) including Epic trainer, bedside nurse, and patient safety specialist. Although I’m no longer employed at Children’s Wisconsin, it is still my happy place and I continue to work with their Health Literacy Committee. I’m currently employed by a medical device company, focusing on clinical education and policy for respiratory monitoring products.
Conquering CHD: How has being a nurse and a mother to a patient with CHD allowed you to connect with patients and families or given you a unique perspective?
Ms. Higgins: I wasn’t in the medical field when Trinity was born. I was a first time mother, I had never utilized the health care system for anything other than checkups, and I had never heard of CHD. Looking back, I had no idea what I was doing. I was scared, confused, and felt stupid asking questions. Whenever I speak with patients, I remember that frightened young woman who always said she didn’t have questions even though she did. I remember the young woman who was so filled with anxiety that she barely remembered some of her conversations with the doctors. I remember the exhaustion, the feelings of hopelessness, and the feelings of not being heard at times. This lens allowed me to meet patients and families where they were, help them advocate for themselves, and tell the healthcare establishment that we owed it to our patients to do better when I saw opportunities for improvement
Conquering CHD: How has the conversation around CHD changed since you first began your family’s journey with CHD? Where would you like to see the conversation about CHD care and support head in the next 5 years?
Ms. Higgins: Trinity is 20 years old now. When we first began our journey the system was just starting to dedicate resources solely to CHD patients. Since then they have opened a hospital unit dedicated to cardiac patients, started programming to help patients with cognitive and neurodevelopment and school support, and started an adult (ACHD) program. The conversation has shifted from merely surviving to asking how these children can thrive and what support they need as adults.
I would like to see more conversations around funding research so that physicians can make evidence based decisions. I would also like to see more work done around health equity and disparities, as there are still gaps in outcomes that exist based on race, socioeconomic, and geographical differences. I want these babies to have the same chance of survival and quality outcomes no matter who their parents are. In addition to that, I feel like there is still a general lack of awareness that these patients exist, making it difficult to get the accommodations and care that they sometimes need. Ensuring them access to healthcare is a must considering how many adult patients aren’t receiving the care that is necessary.
Conquering CHD: What words of encouragement would you like to give to patients and families impacted by CHD?
Ms. Higgins: We are all humans trying to do the best we can with the information we have at the time. Never feel stupid or less than because you don’t understand something and never feel like a bother because you are advocating for your child. Take care of yourself because if you aren’t at your best for you, you can’t be at your best for your child. Every day is a special day, so use the good silverware, the nice plates, and anything else that we tend to save for “special occasions.” The one gift that CHD has given me is that I used to always “look forward” to things, forgetting everything I already had right in front of me.
Conquering CHD: Any new and exciting research or upcoming news you’d like to share?
Ms. Higgins: Conquering CHD is continuing to elevate the family voice to health care providers, and has contributed to recent publications helping health care providers improve their family engagement and health literacy skills. This is exciting for me because patients and families are finally being seen as partners in care.
Conquering CHD: Tell us about your work with Conquering CHD. What drew you to working with Conquering CHD?
Ms. Higgins: The infectious smile and positivity of Amy Basken, former Executive Director of Conquering CHD, drew me to the organization. I met Amy at an educational event when the organization was still known as the Pediatric Congenital Heart Association. Her story, her passion, and her bravery to start an organization to fill the gaps where the healthcare system was falling short was very impactful to me.
Thank you to Ms Higgins 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.
Rita Higgins is the mother of two daughters, one being a young adult with CHD who has undergone 3 heart surgeries. She is a registered nurse and is currently employed with a medical device company. Rita has a special interest in health literacy, and has contributed to published work on the topic. She currently serves as a member of the Health Literacy Committee at Children’s Wisconsin, and is a new member of the board for Conquering CHD. She lives in Milwaukee, WI and enjoys spending time with her family that includes her husband, Mario, her daughters, Trinity and Ariel, and their giant schnauzer, Ramses.
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.