Living with Congenital Heart Disease: A Lifelong Journey
My name is Karla Deal, ACHA’s Senior Program & Peer Support Coordinator, and a person living with pediatric-onset heart disease. I was diagnosed at birth with the congenital heart condition, Tetralogy of Fallot.
My patient and professional experiences have shown me that collaboration within the congenital heart disease (CHD) community matters, as it cultivates pathways of support and reduces barriers to valuable resources that empower patients. Connection and shared purpose strengthen our efforts. This cultivation of community ensures that no one walks the journey of being a CHD patient alone. Having a sense of connection has been especially impactful as I’ve navigated the realities of living with CHD.
Navigating life with CHD is full of unique challenges, from our physical and emotional well-being to our relationships and career paths. I’ve often felt that there isn’t an area of my life where my CHD doesn’t need to be taken into consideration. This is why I feel emotional, mental health, and peer support services are helpful resources for patients navigating life with CHD.
Why Mental Health and Peer Support Matter in Adult Congenital Heart Disease (ACHD)
Peer support and professional mental health services have played different yet complementary roles in my own patient experience.
Before my second open-heart surgery in 2012, I was matched with a Peer Mentor from ACHA. My Peer Mentor was the first CHD patient I had knowingly spoken to. Connecting with a peer who had a similar patient experience to mine has had a long-lasting positive impact. Commiserating over our shared experiences decreased feelings of isolation, put me at ease, and gave me hope.
In 2019, I was diagnosed with health anxiety and received support from a mental health professional, where I learned tips and strategies that improved my overall well-being.
It’s through these supportive services that I’ve experienced just how impactful community can be. Collaborative efforts between organizations matter for patients as they remove barriers to resources and amplify patient voices. They have also helped me understand why collaboration at an organizational level is essential.
I’ve heard it said that it takes a village to raise a child with congenital heart disease. No one should walk their journey as a CHD patient or family member alone. Which is why collaboration is vital to our community. Considering that CHD patients like me are at an elevated risk of developing mental health issues because of the challenges associated with our conditions, we need more than specialized medical care to thrive with CHD; we need a supportive community.
How Collaboration Strengthens the Congenital Heart Disease Community
It is because of this need for a supportive CHD community that collaboration is necessary. Collaboration within the CHD community streamlines supportive resources. Through our united efforts, we also make a greater impact on systemic change by increasing awareness and strengthening patient advocacy, deepening our collective impact.
A partnership that exemplifies this kind of collaboration is the relationship between ACHA’s Peer Support Program and Ollie’s Branch. The Adult Congenital Heart Association is pleased to partner with the Ollie Hinkle Heart Foundation’s mental health program, Ollie’s Branch. This partnership increases access for adults with CHD and their loved ones to gain timely access to the support they need and deserve.
The OHHF will refer adults seeking peer support to ACHA’s Heart to Heart Peer Mentor Program for connection, support, guidance, and resources. In turn, ACHA’s Heart to Heart Peer Mentor Program will refer those seeking professional mental health services to Ollie’s Branch for further assistance.
The partnership between ACHA and OHHF provides the opportunity for CHD patients to access peer connection and professional mental health support — ensuring that CHD patients do not have to experience the CHD journey alone. With organizations like OHHF and ACHA providing psychologically safe spaces for peers to have supportive conversations, there is somewhere to turn for both peer connection and professional mental health services.
From my professional perspective and lived experience as a patient, seeing organizations collaborate gives me hope for the future. I see how those partnerships directly strengthen the support we can offer. We all benefit when organizations band together.
Putting CHD Patients and Families at the Center
It’s exciting to see what can happen when we put patients and families at the center. When someone in the Peer Support program recently sought professional mental health services, we referred them to Ollie’s Branch, where they received timely access to a professional mental health provider.
As a patient, I feel a sense of hope and pride when I witness organizations within the CHD community linking arms to share their resources. I believe that we achieve more together. It brings me peace knowing that when members of the congenital heart disease community need support beyond ACHA’s Peer Support program, they will have the opportunity to receive support from Ollie’s Branch. What we have seen is that partnerships like ours deepen the impact each program would make individually, helping ease the challenges faced by the CHD community.
Community collaborations demonstrate an organization’s commitment to supporting my needs as a patient. Their partnership helps me feel seen and heard, which builds my trust and confidence in them. OHHF and ACHA have both seen the need for emotional, mental health, and peer support for CHD patients and their families. Looking holistically at the patient experience and taking proactive steps to change the landscape of resources provided to the CHD community, their collaborative effort gives me hope for the future and shapes how I envision what’s possible for the CHD community.
“We Need Everyone”: A Call to Strengthen the CHD Community Together
In 2022, when I had a heart catheterization to replace my pulmonary valve, my interventionalist said something to me during my pre-op that has stayed with me. He said, “We need everyone.” Just as it took a dedicated team of experts to successfully replace my pulmonary valve, it takes a dedicated community to ensure patients and their loved ones thrive throughout the lifespan.
The needs of this patient population are broad. Yet when we unify the efforts of patients, family members, advocates, volunteers, and CHD organizations, those needs are more readily met.
Together, we can improve the lives of every CHD patient and their loved ones. As my interventionalist once said, “We need everyone.” I’ll echo his sentiment, with a little color of my own — we need you. Your voice, effort, and financial contributions matter. It warms my heart, pun intended, to see this championing for the well-being of those impacted by CHD.
Collaboration is the heartbeat of progress. Join us in supporting partnerships like OHHF and ACHA. Together, we can make certain that every CHD patient and family member feels seen, supported, and empowered. We are stronger together; we need everyone, we need you.
