Thinking of my brother as the first milestone of his death approaches on May 22, 2016. My apology in advance for the length of this post, but the story covers 47 years…yes that is nearly 5 decades with one ventricle leading his course. Remembering my brother is a message that I shared with my family and Greg the day of his funeral and gives some sense of his strength and personality. I share this again not to remind folks of the sadness but to remember the adventures his life provided. Learning about his life, journey with CHD, our family, and my experience as a sibling and nurse are pieces of history that span nearly 5 decades. I hope and trust that this sharing and transparency will continue to provide hope to other patients and families currently living with CHD.
Everyone has a different story, path, and experiences in life. Connecting and sharing the humanness of the individual stories and embracing in the journey together is critical in the process. So many patients and families in my past experiences have taught me the power of participating and embracing the energy surrounding them and finding ways to live positively and engage in life despite all obstacles, no matter what the CHD lesion or health issue. For example, patients with single ventricle lesions, such as hypoplastic left heart syndrome (HLHS), used to be universally fatal in the early 1980’s and today presents new milestones in life. One graduate of the Fontan operation has graduated from medical school this year and planning an active career in pediatric cardiology for the future. To me, the uncertainty this young lad experiences in life is similar to the uncertainty of my brother’s life and truly inspiring.
Going back to April 24, 1968
My older brother, Greg, was born in April of 1968 before the novel Fontan operation was in the journals and textbooks for complex univentricular disease like his. While not expected to live to 2 years, he grew and thrived. My mother took on monitored his growth on a scale and notebook shared it with Dr. Gallen, his cardiologist. This is similar to the home surveillance monitoring program born out of Milwaukee, WI that is now a national standard of practice.
Fortunately for our family, his cardiologist was able to follow him into late teens until his retirement and transitioned to outstanding leaders in CHD transitioning into adulthood. Dr. Cetta met him in Illinois when Greg was lived in the area and subsequently they both followed each other on separate journeys to the Mayo Clinic in Rochester, MN. I think of it as truly a blessing and part of God’s plan in his continued outstanding care into adulthood.
Moving back in time on the CHD journey, we will start with the first surgery. Shortly after my birth in March of 1970, the medical team was pleased to see Greg make it to his 2nd birthday recommendations were made to proceed with a classic BT shunt in 1970 by Dr. Glicklich to provide more pulmonary blood flow. In 1985, he underwent the Fontan operation by Dr. Puga to again aid in pulmonary blood flow and facilitate a better quality of life. Twenty years later, a pacemaker was needed and placed in 2005 by Dr. Tweddell to aid in rhythm changes and ventricular function support. Ten years later, his final surgery was a heart transplant in April of 2015 by Dr. Mora and Dr. Daly. The transplant was a true gift and strong heart. Along the recovery path, many unexpected bumps surfaced despite the strength of heart and ultimately comorbid complications led to Greg’s demise that fateful day.
Looking back at these surgical milestones, I am truly grateful for the countless research advancements in my brother’s short lifetime and opportunities for quality of life within outstanding institutions. As mentioned, the Fontan operation wasn’t even an option on the table when he was born in 1968 and has undergone many revisions in 5 decades. Greg strongly supported research whenever possible and truly understood the value of research for progress in CHD. Retrospectively, it is hard to imagine fully grasping the advancement of the first successful pediatric heart transplant in 1984 and the impact it would have on my life in later years.
At the time, I was just 14 years old, the age of my son today. Focused on finishing 8th grade in middle school and entering the unknowns a freshman year in high school, I was not thinking about research and progress in CHD. Developmentally, I was interested in boys, hanging out with friends, and new adventures. We were planning our family’s holiday weekend’s at the cottage and deciding what we would play behind the motor boat (skiing, kneeboarding, and whatever else we dreamed up). I had no idea that in six months a big surgery would be undergone for my older brother, which honestly may have been a blessing in disguise. Greg was always “just a kid” like me and knew how to tease and pester his sister. I never thought of him as any different other than his thoracotomy incision and clubbing digits.
Having said that, if team leaders in the cardiovascular field of CHD had not taken a risk to develop the Fontan operation with its modifications through the years and identify cyclosporine as a key immunosuppression to achieving a successful transplant in 1984, my place here today would be an entirely different experience. The opportunity to share memories of normal developmental milestones and hear the voice from my brother on the phone telling me that there was a heart available for him to receive and “Could I call Mom?” would never have been a moment in my memories. In 2015, this was at this time point that his Fontan circulation was failing that new heart was a desperately needed resource and only option for better quality of life. While the outcome was not what our family would have liked many weeks later, Greg did have the opportunity and potential for a renewed life with his family. That is a true gift in itself.
Health care providers, colleagues, and “true friends” that traveled along closely throughout this family journey will forever have a special place in my heart. Every caring team member (from surgeon, cardiologist, anesthesia, nursing, fellows and residents, social work, dietary, lab techs, child life, PT, OT, clergy, respiratory support, custodial, and all the way down to the folks at the information desk greeting and redirecting families who are lost in the hospital system) are valuable to the success of patients and families. We could not have been so successful without the quality leaders stepping up to the plate to engage in revolutionary treatment options and cares.
My hope and belief is that our family’s journey with CHD will teach us how to improve life for other patients, siblings, and families of today and the future. We have come a long way and have many uncharted paths in life to maintain a good quality of life for all impacted by CHD. We have countless other milestones and innervations yet to be covered today and in the future. Sending warm thoughts to all those parents, siblings, and health care providers for their never ending strength and positive spirit this day. I have long been an advocate organ donor since 16 years of age, continue to advocate 30 years later, and will continue to do so for the rest of my lifetime. Sending grateful warm thoughts to those dear families who shared a terrible loss in their family with a gift of life for another.
Greg’s sis, Michelle