From Questions to Advocacy: A Mother’s Mission for Heart Health Research
I can still vividly remember sitting in Maternal Fetal Medicine and typing into Google “What is the life expectancy for Tetralogy of Fallot with Pulmonary Atresia?” as we received my daughter Meadow’s new diagnosis. I was 36 weeks pregnant when we found out, and at that moment, her potential life expectancy was the one piece of information that I was desperate to find. But here’s the thing – if you google it, there’s no clear answer. Instead, there are just a random assortment of studies that report wildly different survival statistics. It made me feel like my entire universe was caving in to not be able to find it. The one thing I felt I needed most simply didn’t exist.
This is the reality for many heart parents and patients today though. Part of the reason why there is not an answer to this question is the fact that we are very much still living on the cusp of medicine when it comes to Meadow’s heart. As a NICU nurse once told me, “I can remember a time in my career that we would put babies like Meadow in their parents arms until they passed.” It was in only 2008 that there are now more adults living with congenital heart disease than children. Diagnoses, treatment plans, and surgery results change frequently in this world as we learn more. The research that is being done today is quite literally life changing.
The other reason why we don’t have this data though is the fact that we as a healthcare system do not keep consistent data on these children throughout their lifetimes. Children with congenital heart disease are living long, full lives for the first time in history. By following the complexities of their healthcare journeys, we can make more educated decisions about the future of not only their own care, but those who come after them. This is why I heavily supported the reauthorization of the Congenital Hearts Future Act this year – one of its main purposes is to emphasize and continue surveillance programs in the future.
Earlier this year, I finally did receive a glimmer of hope for my original question. Through an advocacy conference, I was able to meet an elderly man with very similar defects to Meadow – he was nearly 70. My hope is that through more research, Meadow’s future will be just as long. I also hope that other parents will be able to have answers to questions about life expectancy because that means we are doing proper surveillance. As of today, Meadow is likely facing at least four more open heart surgeries during her lifetime. Living at the cusp of medicine is both terrifying and beautiful at the same time, but advocating for her best care is always top of mind for us. While we don’t know exactly what her future will look like, we do know that we will always advocate for more awareness, funding and ultimately research.
Sarah Michelle Boes, MSN, APRN, FNP-BC, is the Founder of Sarah Michelle NP Reviews and currently serves as the Chief Nursing Officer at Blueprint Test Prep, a new board member for Conquering CHD starting January 2025, and a Committee Chair member for Children’s Heart Foundation Annual Cincinnati Walk. With a robust educational background including a BSN from the University of Kentucky and an MSN in Nursing Education from Western Governors University, Sarah has extensive experience in oncology, intensive care, and nursing education. In 2020, she launched SMNP Reviews, an innovative platform that rapidly grew to a seven-figure business within seven months. Following SMNP Reviews’ acquisition by Blueprint in 2022, Sarah transitioned to a role where she continues to oversee the nursing vertical and integrate cutting-edge educational technologies.
Sarah’s entrepreneurial journey is deeply intertwined with her personal life. Her daughter Meadow, born with severe heart defects, has required extensive medical care, inspiring Sarah’s commitment to pediatric cardiac research and care. In recognition of Meadow’s journey, Sarah and her husband are making a $15 million legacy donation to Norton Children’s Hospital, where the new Congenital Heart Center will be named in their honor. This contribution underscores their dedication to improving healthcare for children with congenital heart conditions.
Beyond her business success, Sarah is a passionate advocate for mental health and female entrepreneurship. Her own experiences with anxiety and OCD have fueled her mission to help others manage mental health challenges, particularly within high-stakes environments like healthcare. She leverages her platform to support female entrepreneurs and promote awareness about the importance of mental well-being in professional settings.
