In literature and in medicine, the heart is seen as the epicenter of human life. Literally speaking, the heart beats over 100,000 times a day, moving around 2,000 gallons worth of blood. Metaphorically speaking, the heart represents feelings of love, passion, empathy, caring, forgiveness, and general emotional consciousness. The fact that the Oxford English Dictionary entry for “heart” clocks in at 15,000 words is an indication of the deep and complex understanding of the organ in popular consciousness.
The most recent recipient of our scholarship for individuals with disabilities, Bailey Faith Herfindahl, has an abnormal heart in the medical sense but also a staggeringly powerful heart in the metaphorical sense. Through her words and her actions, she demonstrates how dedicated people are capable of not just working through their own struggles but directly aiding in the struggles of others.
Bailey intends to pursue a doctorate in psychology and to serve as a pediatric hospital psychologist. Her hard work in high school academia has earned her over 40(!) college credits towards this goal, as well as two varsity letters. She has also steadily engaged in outreach to children with congenital heart disease and parents of newborn children with congenital heart conditions.
We are blown away by the level of dedication shown by Bailey and, yes, the tremendous amount of heart she demonstrates through her dedicated service to others. We have no doubts that her scholarship award will be put to excellent use in her pursuit of making a difference in the lives of those with serious medical challenges.
A Childhood Marked by Medical Interventions — And a Call to Intervene in the Lives of Others Who Struggle
Bailey Faith Herfindahl was born with an extremely rare congenital heart condition known as Shone’s Complex. In a sample study of 4,189 adults with heart disease, just 28 (0.67%) had a Shone’s Complex diagnosis. For Bailey and her family, the rareness of this condition meant a lack of guidance on living through it as well as a need for repeated medical interventions.
“At the age of nineteen, I have been through eight open-heart surgeries, required resuscitation to be brought back to life twice, received a pacemaker, an artificial mitral valve, and experienced more hardships than many of my peers,” Bailey recounts. “My first open heart surgery was when I was roughly two days old and the other seven have happened throughout my childhood and teenage years.”
In addition, she says that “every six to eight years I require a pacemaker battery change, and those surgeries will continue throughout the rest of my life, in addition to possible future open-heart surgeries.”
True to the middle name given to her, Bailey’s faith only strengthened throughout these struggles. She expresses that “God has used this opportunity to allow me to learn the value of empathy, time, and faith and placed me on a path to use these experiences to help other children.”
That call has led Bailey to seek a career in pediatric hospital psychiatry.
“I want to help children overcome emotional and mental obstacles and fears that go along with the complex challenge of significant short-term or chronic health issues,” she pledges. “By helping children with rare diseases optimize their medical and lifestyle strategies, mental health, and navigation of medical testing and treatment, I will provide them with the best opportunities to maximize their greatest potential, achieve their own goals, and succeed throughout their lives.”
In fact, that same call has already led Bailey to begin making a measurable difference in the lives of others impacted by congenital heart conditions. For example, she has volunteered with a non-profit that supports families impacted by heart disease.
Currently, she is developing an outreach program that aims to assist parents who have babies newly diagnosed with congenital defects by providing them with “direct support, advice, and resources from the perspective of older teen and young adult survivors.”
Bailey’s work in preparing this program encompassed an extensive literature review, the distribution of a comprehensive survey, and coordination with multiple other outreach organizations.
While Bailey’s medical challenges have left her with less stamina than her peers and more disruptions, it has also left her with a deeper understanding of the need for showing love to others in similar struggles.
“As a result of my heart disease, I know just how important the time we have is and how valuable it is to share love, compassion, and kindness to others.”
A Goal to Change Perspectives and Amplify Support for Children With Rare Medical Conditions
Facing down medical challenges at a young age leads to a markedly different life journey, by nearly every measure.
Unfortunately, children and families facing these medical challenges do not receive the support — or, at very least, affirmation — that they may crave.
“I think much too often the system labels these children as ‘strong’ and does not provide them with the necessary psychiatric assistance,” notes Bailey. “It’s vital that our healthcare system realizes that though these children are, indeed, so strong, they are working through psychiatric challenges very few healthy children deal with and they require the necessary support to work through those.”
Hard medical truths often come with hard psychological truths, in other words. Someone preparing for the next open heart surgery must grapple with the medical side effects and risks associated — not easy subject matter for a young child to handle! Yet, the nature of the healthcare system means that only so many resources are dedicated to the mental health of patients while so many other resources go to their ongoing physical health.
All-too familiar with this experience, Bailey wants her own perspective and lessons learned to be a source of support and motivation for others.
“In their lives filled with hospitals, doctors, and medicine, I know how it can feel like you are just another sick child,” she reflects. “I want to share love and compassion with others so that each child feels heard, valued, and understood.”
One source of such love came at an early age for Bailey, during her experiences at Camp Odayin for children with heart disease. Sharing time with others who had similar experiences not only vindicated Bailey’s perseverance, it also taught her to be strong.
“There, I truly grew into the person I am today. Camp taught me how to be proud of my scars and my battles and showed me that I am never alone during them.”
For other, younger children going through complex medical challenges, Bailey wants them to remember a quote from one of her favorite films, Letters to God: “We were given this battle because God knew we were strong enough to handle it.”
She expresses that “our challenges are so hard and sometimes it truly does not seem fair that we have to go through them, but good will always come out of the bad. Know that you are so, so strong, and never let your disability stop you from accomplishing your goals!”
Going All-in on Compassion
The past two years have been extremely hard on all of us, especially those of us facing unique challenges that few can understand. We can sincerely say that Bailey’s clear love for others is a welcome break from the evident harshness of the world around us. Simply put, we need more people like her to show us why taking the time to relay care and concern can matter so much in someone else’s life.
Bailey recommends that others read The Gift of an Open Heart by Nicholas Zerwas to truly understand what life is like for a child born with heart disease. Understanding is the first step to caring, after all, and caring is something we need even more of in the world than we already have.
We look forward to Bailey no doubt excelling in her collegiate and doctoral work and stepping into the shoes of the career she’s imagined for herself. We would also like to thank her for her past and future efforts in showing others that they are seen, heard, loved, and cared for.