First Person with Kiona Allen, MD: Helping “Warrior Children” Live Up to Their Potential
Congenital anomalies of the heart are the most common birth defect, 60 times more common than childhood cancer. Each year twice as many American children die from congenital heart defects as all forms of childhood cancer combined. Despite the lack of resources and funding, over the past 50 years, care of children with congenital heart disease has been transformed. Passionate cardiologists like Kiona Allen, MD, are a big part of the reason.
I love to talk about my passion: supporting patients and families through their lifelong journey with congenital heart disease. As medical director of the Single Ventricle Center of Excellence and of the Regenstein Cardiac Care Unit, I get to see firsthand how far we’ve come as a field. For instance, hypoplastic left heart syndrome (or HLHS) is the most common type of single ventricle congenital heart disease. In 1980, around the time I was born, every single child born with HLHS died. Imagine that—every single child.
But in the subsequent years, a bold new operation would change everything. The Norwood Operation paved the way for this modern era where children with HLHS are expected to survive into adulthood. Yet in surviving, their lives and the lives of their families will be transformed.
As a single ventricle doctor, it’s my job to shepherd patients and families through the innumerable critical decisions, forks in the road, and clinical ups and downs that come with a lifetime of managing chronic illness. For most of these families, despite the extensive counseling we try to provide, there is no way to really wrap their heads around what they face: in some cases as much as six weeks in the hospital at birth, weekly appointments for the first four-to-six months of life, multiple daily medications, feeding tubes, home oxygen, frequent rehospitalizations including multiple open heart surgeries before they even start school.
Then there’s the developmental, academic, and mental health challenges, family stress, financial strain, and a constant worry that letting any of these balls drop could be the difference between life and death for their child. Can you imagine the toll this can take on patients, families, and providers alike? And yet, with our help many of these same children and families are instead focused on living in the moments of joy between these struggles. And that’s what gets me out of bed and back to work every day.
Despite everything they go through, even our sickest patients are finding ways to live life to the fullest. Their resilience, fighting spirit, and bravery are an inspiration to me every day. With the right supports, our patients are roughhousing with their siblings and going to school and riding bikes with their friends and studying for their drivers test and eventually setting out on their own to find their way as adults.
There are now more adults living with congenital heart disease than there are children, which would have been unimaginable to the generation of cardiologists and cardiac surgeons who came before me. We have created a world where these children get to have a future. But it is a heavy weight to feel responsible for the well-being of not just the patients, but all those who love them so deeply – parents and siblings and friends. I am able to do this only because of the incredible individuals around me.
The phrase “it takes a village” is an understatement. It takes dedication and passion and innovation at every step of the journey. It takes a team like our multidisciplinary Lurie Children's Heart Center Team to not just manage the patients in front of us, but to identify the next transformative change that jump-starts the next giant leap forward.
Our Heart Center, and the team that brings it to life, pulls together the best and brightest components of research, clinical care, collaboration, and advocacy, combining compassion and teamwork with a relentless pursuit of innovation and discovery.
Together we have been able to achieve some of the best outcomes in the world, leading the field as far as number and complexity of heart transplants and mechanical heart support, redefining the possibilities for cardiac muscle functional recovery with groundbreaking stem cell trials, and accelerating the development of advanced diagnostic tools to facilitate early identification and treatment. I can confidently speak for my colleagues when I say that we are all fueled by a deep love of this work and a passion for lifting the lives of our patients and families.
I have learned that I can make a greater impact by doing what I am most passionate about - partnering with patients, parents, and community advocates to ensure that we are making a difference in real time and on a GLOBAL scale for all children navigating cardiac disease. We can do this by not just producing ground-breaking clinical and translational research but by leading the way in multicenter international collaboratives and quality improvement initiatives.
We do this by working hand in hand with our patients and parents living with the disease. We have learned that without their critical voices at the table we aren't asking the right questions and tackling the right problems. With their input, we have expanded our focus beyond mortality to social determinants of health, health equity, mental health, and neurodevelopmental outcomes so that these warrior children can live up to their full potential.
Together we are optimizing the outcomes that matter for these vulnerable children and young adults: not just quantity of life but the quality of the life they are living. It’s hard work. But when I look around at our families thriving despite adversity, it is more than worth it.