Guest Editorial: Ollie’s Branch – Putting the Heart Back in Healthcare

Ollie was diagnosed with a congenital heart defect (CHD) three days after he was born. For 13 months my husband, Mark, and I fought alongside him until a series of unfortunate events in January 2013. Ollie sustained complete brain and brain stem damage due to complications originating from his CHD.  I stared at the x-ray image of Ollie’s brain as the doctor explained the diagnosis to me. I fell to the ground. I didn’t have the strength to stand up, and a cry came out of me that I’d never heard before. Mark and my father-in-law picked me up off the floor — literally and figuratively — they held me up and surrounded me with their love. And soon, family and friends came from near and far and wrapped our family in love. Then acquaintances. Then complete strangers. And the circle surrounding us grew and grew. Through all we received, we found the peace, hope, and strength to keep going. This experience led us to start the Ollie Hinkle Heart Foundation with one simple goal, to spread love and build a legacy that Ollie didn’t get the chance to create for himself.

The mission of the Ollie Hinkle Heart Foundation (OHHF) is to strengthen and empower families affected by congenital heart disease. We address several areas of care for families but one of our growing focuses has been to address the disparities and remove the barriers to care that prevent many heart families from accessing mental health support. While CHD is the most common birth defect in the U.S., affecting approximately one in one hundred, or 40,000 newborns each year, it remains the least researched. Additionally, studies have shown that parents of children with critical CHD are at an elevated risk for mental health problems: 30% have symptoms consistent with a diagnosis of posttraumatic stress disorder; 50% report clinically elevated symptoms of depression and/or anxiety; and up to 80% report experiencing severe psychological distress and present with clinically significant symptoms of trauma. The stress heart families face is often compounded by other social determinants of health that exist in our society. Yet, the emotional support and mental health needs of caregivers of medically complex infants and young children are often overlooked.

We know that the stress and challenges heart parents and other caregivers face can have significant and lasting effects if not properly addressed. Supporting the mental wellness of heart families and caregivers has been a top priority for OHHF since 2018, but this focus became even more relevant and necessary with the arrival of the COVID-19 pandemic. With hospitals prioritizing minimizing the spread of COVID-19, families faced heightened levels of stress and isolation and the need for reputable, accessible, and safe support became greater than ever before. Our team came together and almost overnight we created the early stages of Ollie’s Branch, an access point to mental health specialists that support heart families through virtual therapy sessions offered at no cost to the recipient. Ollie’s Branch works in tandem with the hospital system to care for the entire team supporting a heart warrior, including parents, grandparents, siblings, other primary caregivers, and even the clinical staff caring for these patients. Despite the pressure of the pandemic, we have offered families a lifeline for lifelong support that has grown significantly since this program was initially implemented in April 2020.

Since then, Ollie’s Branch has received almost 200 referrals for services and provided over 500 therapy sessions to heart families and caregivers. We have partnered with seven hospital systems and our reach spans 12 states. Through Ollie’s Branch, OHHF is committed to providing FREE and reputable mental health support to every heart family regardless of race, ethnicity, and socioeconomic background, removing barriers to mental health such as availability, accessibility, finances, and stigma. Early results indicate that individuals who participate in sessions with a therapist through Ollie’s Branch experience fewer barriers to care and report improvements in depression and anxiety markers.

Overall, supporting mental wellness and extending peace of mind for heart families and caregivers can enable them to better cope with CHD and care for the child – helping to strengthen heart families and provide benefits for the entire care team. Ollie continues to pay his legacy forward by providing services to those in need.