Turning Loss into Love And the Impact CHD has on the Mental Health of the Heart Warrior and Their Caregivers

When Jenn and Mark Hinkle lost their son Ollie to Congenital Heart Disease, they decided that the love and support they received from friends and family was exactly what they needed to share with others continuing on a similar journey. Read on to learn how their experience is helping to increase access to Mental Health Care.

Ollie was diagnosed with a congenital heart defect 3 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 congenital heart defect. 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 that we received, we found 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 (CHD). We address several areas of care for families but one of growing focuses has been addressing disparities and removing barriers to care that prevent many heart families from accessing mental health support. While CHDs are 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 post-traumatic 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 these families face is often compounded by other health or socioeconomic disparities that might exist. Yet, the emotional support and mental health needs of caregivers of medically complex infants and young children are often overlooked.

Supporting the mental wellness of heart families and caregivers is a top priority for OHHF. The stress and challenges heart parents and other caregivers face can have significant and lasting effects if not properly addressed. In response to the growing need for support, we started Ollie’s Branch, an access point to mental health specialists that support heart families (including parents, grandparents, other caregivers, siblings and even the heart patient) through therapy sessions offered at no cost to the recipient. One of the pillars of Ollie’s Branch is our commitment to providing FREE and reputable mental health support to every heart family regardless of race, ethnicity, and socioeconomic background; and removing barriers to mental health such as availability, accessibility, finances, and stigma.

We also believe in extending love to the clinical care team that support those with CHD as they are an integral part of the child and family’s healing. By supporting the clinical care team’s mental wellness, they can better cope with the stress and demands of the cardiac unit and provide top notch care for all heart warriors.

Ollie’s Branch has seen immense growth since our inception in April of 2020. To date, we’ve established 7 formalized partnerships with hospitals across the country. We have a community of more than 42 therapists across 11 states who have conducted more than 500 therapy sessions. We continue to respond to 100% of referrals to Ollie’s Branch, 75% of which resulted in therapy sessions. 

By supporting mental wellness and extending peace of mind of heart families and healthcare professionals, it 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.

*We are sharing this guest blog to alert patients and families to possible resources available to them, and as of the time of publishing, OHHF is not an official partner of Conquering CHD.

Jenn Hinkle, the Co-founder and Executive Director, Ollie Hinkle Heart Foundation, was born and raised in St. Louis and graduated from DePaul University in Chicago in 2004 with a degree in marketing. While in Chicago, Jenn began working at Gibson’s Steak House where she met Mark Hinkle. The pair moved back to St. Louis, worked in different jobs in the restaurant industry and soon welcomed their daughter, Maddie, in 2009, and their son, Oliver, in 2012. After Ollie was born, they learned that he had a congenital heart defect Unfortunately, Ollie lost his battle with CHD in 2013. From their experience, the Hinkle’s set out to take their love for Ollie, and all the love they were shown, and share it with others. The Ollie Hinkle Heart Foundation began as a way to give back and manage grief, but over time it became a successful and powerful organization and resource for heart families. Jenn leads the organization while also owning the Olive + Oak Hospitality Group with her husband. They live in St. Louis with their two daughters, Maddie and Annie. 

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