ACHA: The Missing Link

Hi, I’m David and I was born in Fort Worth, TX, at Harris Methodist Hospital. Back when I was born, heart defects were not detected like they are today, so my family did not know there was a situation with me until I was born as a blue baby. It was quickly discovered I was born with transposition of the great arteries.

My first procedure was the day I was born to create a hole between the upper chambers of my heart to allow oxygenated red blood to reach my body. I had my open heart surgery at almost three months—the Senning procedure at Fort Worth Children's Hospital, now Cook Children's Hospital.

Fast forward to adulthood and I am now serving on ACHA’s Patient & Family Advisory Board (PFAB), which has been a great experience and an honor. As a CHD patient—and one who fell out of proper medical care after graduating college—being able to engage in the CHD community, specifically the adult CHD community, through my role with ACHA has been a missing link in my life that I didn’t know was there.

David meets with local members of the CHD community and fellow ACHA volunteers at the CHD Connections in Fort Worth earlier this year.

Like many, I discovered ACHA by doing research for myself and coming across their adult CHD accreditation program. It honestly was a very eye-opening discovery, realizing that such a community and an organization existed for someone like me. I knew I wanted to be involved and connect with others who had shared experiences. I also quickly realized there was a need for people to step up and advocate not only for adult CHD patients, but all CHD patients, including the little ones who will one day grow up to be adults.

When the opportunity to apply for the PFAB presented itself, I was eager to go for it. I saw this as an opportunity to not only meet other CHD patients and families, but as a chance to bring awareness and advocacy to my home metroplex of Dallas/Fort Worth (DFW). At that time, ACHA did not have a big presence in DFW and I personally knew only one other CHD patient. The opportunity to grow my personal CHD network and potentially grow the DFW network was something that motivated me to apply for the PFAB.

One of my first activities as a new PFAB member was a trip to Houston for an ACHA Heart to Heart Regional Conference. It was my first time meeting staff and fellow volunteers from ACHA in person. Everyone was welcoming and engaging, bringing a true sense of community to our cause. The educational conference was insightful, and the chance to meet everyone cemented my thoughts and feelings that this was the right organization to be a part of.

Since joining the PFAB, I have had the chance to engage with the staff, Board of Directors (BOD), and other PFAB members one on one and through our meetings, allowing me to share my ideas and input. It is a very collaborative effort from everyone involved, led by the staff and BOD, who take all our input seriously.

What I appreciate the most are the resources and training ACHA provides us to be successful advocates in our own communities. One of the fun things I get to do is coordinate monthly CHD Connection events across DFW—bringing together the local CHD community and allowing us to make connections and share our journeys. I have been asked to speak at a local ACHD accredited clinic and to their hospital ACHD committee, providing them with information and updates on what is happening at a national level with ACHA. I also have had the opportunity to work with one of my local city council members to recognize future Congenital Heart Disease Weeks in our city with a proclamation.

David at Agora Park in Corinth, TX, where he was invited to attend the unveiling of an AED that has been installed on the grounds by Run for Dylan and to spread CHD awareness. Pictured are (from left) Run for Dylan founders Gus and Lisa Dorrell, David, and Councilmember Kelly Pickens.

PFAB members also get to help with other ACHA projects like Walk for 1 in 100. DFW is hosting its first walk this year and I am very excited to help get it off the ground. There are many cities where a walk could be hosted with the support of the local CHD community, which could be spearheaded by a PFAB member.

One of the most powerful parts of our role as a PFAB member is engaging with the ACHA staff and BOD to share our viewpoints as patients or family of patients. We play a key role in the actions ACHA takes, not only from helping decide what direction to take and what to do, but also implementing those decisions. Engaging our local and federal elected officials through our advocacy work and leading community events to bring people together while spreading CHD awareness are just part of our role as PFAB members.

Looking ahead, I am excited to see where the PFAB can help expand ACHA’s reach, especially as we welcome new members from new parts of the country. I have served since September 2024, and in my short time, being a part of the PFAB has been very rewarding. I encourage any CHD patient or family of a patient who is interested in applying to do so. Your connection to your hometown and your input to ACHA could help shape your local CHD community.

The application for ACHA’s PFAB is available by clicking here. All applications are due June 1, 2025.