Retired attorney William Causey was born with “blue baby syndrome” — a condition in which there is not enough oxygen in the blood — and it later caused him to undergo heart surgery in 1949, when he was just a few years old.

The first operation of its kind had happened just five years earlier in 1944. Now, countless children have been saved by procedures developed by pioneering medical professionals like Helen Taussig, a doctor renowned for having founded the field of pediatric cardiology.

“In the 1980s, I saw Helen Taussig giving an interview on television, and I wrote her a letter,” said Causey. “She wrote back to me: ‘Dear Bill, the fact that you were able to write me a letter years after surgery has convinced me that my life’s work was worthwhile.’”

Living his whole life needing primary care prompted Causey to become involved with the Adult Congenital Heart Association (ACHA), a Media-based nonprofit with a mission to empower the congenital heart disease community by advancing access to resources and specialized care that improves patient-centered outcomes. Through education, outreach, advocacy, and research, ACHA serves and supports the nearly two million adults with congenital heart disease, their families, and the medical community.

Causey was recently appointed to the organization’s board, along with:

• Binta Baudy, Assistant Vice President, Texas Children’s Hospital
• Mindy Beyer, Quality Improvement Specialist, Maine Medical Partners — MaineHealth Cardiology and Congenital Heart
• Neema Khatri, Branch Chief, Recovery Support Function Coordination, Federal Emergency Management Agency
• Kristi Ryan, Nurse Practitioner, Adult Congenital Heart Program, OSF HealthCare Children’s Hospital of Illinois

“I look forward to working with these accomplished professionals,” said Jeff Ishida, Chair of ACHA. “They bring diverse backgrounds that will help further our mission and strengthen ACHA’s presence and impact in communities all across the nation.”

Congenital heart disease, one of the most common types of birth defects that is diagnosed in one in 100 births, is a chronic illness that ranges among simple, moderate, and complex heart defects and needs to be monitored over the course of a patient’s life.

Causey’s cardiologist pushed him to get involved with the ACHA, and he said he is excited to see the organization grow and further its mission of getting adults specialized care.

“Being involved in ACHA is my way of giving back to the medical community 70 years after they saved my life,” said Causey.

While ACHA can accredit hospitals in populated areas, care is also needed in less-dense areas where people need help but do not have easy access to it. Causey and Beyer became board members to advocate for this care to be widespread throughout the country.

Now a cardiac nurse working as a Quality Improvement Specialist, Beyer was born with a heart defect and had surgery in 1990, when she was 12 years old.

“The night after my surgery, I headed down to the nursery where there were parents with their kids who had heart defects like mine,” said Beyer. “I saw the look on their faces when they saw me walking, and I knew I needed to work in healthcare. Now, I use my passion for helping people every day as a nurse and at ACHA.”

Beyer and Khatri will co-chair the organization’s newly formed Patient & Family Advisory Board, which will provide advice on current and proposed ACHA initiatives; receive and respond to diverse consumer perspectives; and help execute new initiatives in local communities.

Learn more about the Adult Congenital Heart Association.