Fortunately, he recovered and spent many years catching up with things like learning to walk and eventually going to school.

In 2016, at age 27, he developed increased respiratory infections and fatigue. As a result of his TOF repair as a child, he had developed severe pulmonary regurgitation, severe RV dilation and "challenging anatomy."

Cardiac conferences were held between two medical centers. Evolving technology became a promising option for Percutaneous Interventional Cardiology, as an alternative to Open Heart Surgery, although medically feasible decisions are criteria driven. less invasive hybrid Cath lab procedure was promising, the Transcatheter Pulmonary Valve Replacement (TPVR) for our son was unsuccessful as his pulmonary valve sizing was suboptimal for adaptability of the necessary equipment. These procedures are not without risk and long-term data is evolving. The first transcatheter pulmonary valve in humans was in the year 2000. Now, transcatheter valve procedures are becoming more readily available in hospitals with Interventional Cardiology programs and the technology is rapidly improving.

DANNY'S INCREDIBLE JOURNEY HAS ENCOURAGED ME TO DO BETTER. EVERYONE HAS A STORY. WE ARE ALL HERE FOR A SPECIAL PURPOSE.

The transition to adulthood for people with Down syndrome and CHD is an important factor to consider to promote overall wellness, prevention of complication and timely access to life saving or palliative treatments. Improved understanding of how gene expression affects cardiac function, improved health screenings and access to care are hallmark for improving the lives of people with CHD. Partnering with families and health teams is essential for promotion of inclusive equitable care for this vulnerable population. Working with health

professionals to help with understanding and accommodation, will improve the clinical experience of enduring necessary screening tools as EKG's, Echocardiograms, Cardiac CT scans, lab work, etc.

CHD was recognized and became a subspecialty for Physician Board Certification in 2016. Sharing experiences, knowledge and resources becomes our strongest asset when advocating for our children. Coordinating and working side by side with an interprofessional health team ensures safety, quality and best practices.

Last year, we celebrated Danny's 30th Heart Anniversary since his initial cardiac repair. This November, Danny will be 33 years old. He enjoys listening to the Beach Boys and Styx, collecting Toy Story characters and folding dish towels. He also enjoys socializing and going out to breakfast with cousins and is the happiest guy I know. Danny still has severe pulmonary regurgitation and is currently without symptoms of heart failure. Danny's incredible journey has encouraged me to do better. 

Danny's incredible journey has encouraged me to do better. L Everyone has a story. We are all here for a special purpose. Either by evolving to it, or something we are driven by. From my heart to yours, Happy Heart Month! •

ABOUT THE AUTHOR:

Doreen Bestolarides R.N. is a parent and professional advocate with over three decades of hospital nursing experience, with a focus in critical care. She has dedicated the direction of her nursing career, by developing a nursing role, to better serve hospitalized patients with developmental disabilities. She has continued that advocacy in her personal life to not only be a resource and educator in her own community, but to pursue her vision on the national stage through organizations such as DDNA (Developmental Disabilities Nurses Association) on the Practice Committee, defining nursing practice standards; the AADMD; and serving as Board member for ADHC (Alliance for Disability in Healthcare Education). She is the 2021 recipient of the AADMD Family Advocacy Award. She retired from the hospital in 2020. For questions, call 209-470-8287.