Present Day: Univentricular congenital heart disease awaiting cardiac transplantation hospitalized at the Mayo Hospital
It is December 14, 2014 and the eve before I am preparing for another journey by car with my oldest brother Jeffery, who lives in Appleton, WI. We are traveling to the Mayo Clinic in Rochester, Minnesota which is approximately 300 miles away and 5 hour drive. Greg is now 46 years old and quite a veteran of the hospital environment as is our family. The vast landscape of the Mayo Clinic does not itself bring about worry or fear. The hospital structure and all that it represents, however, resonates many memories of uncertainty, hope, fear, and even some family memories of laughter.
Our family has navigated through clinic visits and hospitalizations centered around Greg’s CHD, routine and sick pediatric visits, and the unexpected broken bones requiring weeks of traction in childhood. Unfortunately, we are all too accustomed to the routine activities and expected transitions. It seems appropriate that I will begin the story of my family’s first exposure to the complex pediatric medical issues as we are in the midst of awaiting for yet another surgery, cardiac transplant 44 years later.
As I strolled through the archives of history, dialogue with experts in the field, and reached out to family to provide clarity for this period of time when I was just a tiny newborn and infant, I found the evolution of cardiology was growing along paralell lines along with my brother’s diagnosis and treatment options. If we can isolate a diagnosis then we can treat and potentially cure the disease, right? This is not the case in regards to most CHD diagnosis, often referred to as a disease with many palliative treatment options. It would be an ideal expectation to be curative but not a reality today.
Science has evolved rapidly in recent years, particularly stem cell technology and other combinations of innovations. I am optimistic and hopeful that practical options will come to light creating a truly sustainable option for more patients and families in the future and minimize surgical procedures or the disease trade-offs of disease states such as cardiac transplant recipient. Potential co-morbidities and are associated with any diagnosis. The unfortunate nature of CHD is that at the “end of the line” of palliative options for single ventricle disease, a completely new set of disease state issues are presented, such as rejection.
The presence of excellent research teams searching and focusing on a cure for CHD is evident in many facets. Together, with collaboration and continued parallel strides in research from the bench to the bedside in nursing and medical communities, research will target the co-morbidity disease related impacts on health, wellness, and ultimately create an effective cure for CHD.
Historical family perspective
In April of 1968, my folks became proud parents of a gorgeous blond haired blue eyed young infant of full term and no complications other than at birth he was noted to be quite serious CHD and “blue” or cyanotic. Our family doctor quickly became aware of the concern for his condition and alerted my parents of the need to seek further treatment. At the time, Milwaukee Children’s Hospital was not too far away and had folks specialized in pediatric cardiology who could help guide the assessment, diagnosis, and treatment of my brother’s condition. He was transported by ambulance with my father to Milwaukee Children’s for several day’s worth of testing to further delineate the cause of his cyanosis. He underwent a number of tests and the CHD diagnosis of single ventricle or more specifically univentricular anatomy.
My father traveled to Milwaukee with his father and eldest brother on numerous occasions around his scheduled work during this time. My mother remained inpatient at St. Elizabeth’s Hospital for many days following the birth and delivery and then eventually able to reconnect with her son in Milwaukee. During this time of separation, Greg was formula fed (traditional calories per ounce) since breastmilk options were not as prevalent during this time period given the circumstances of mother and child separation and lack of clear data on the nutritional needs in complex CHD. My parents report there was not a lot of options on the table locally to treat the concern, and he was expected to live 1-2 years. Around the time when I was born in March of 1970, the questions again rose about how to provide treatment and options for my brother’s medical condition. There was a surgical doctor who was providing options for infants that were “blue” and needed extra blood flow. His name was Dr. Marvin Glickglich and had an office out of the Pfister Hotel in Milwaukee, WI near Milwaukee Children’s Hospital. My parents spoke with Dr. Glickglich and his cardiologist who was also chief of pediatric cardiology, Dr. William Gallen. There was a shunt called the Blalock-Taussig shunt that might be an option to prolong Greg’s life and provide a better quality of life. In an effort to not re-invent the wheel, I have attached a very good summary of the history of the surgery done at John’s Hopkin’s Hospital.
My parents asked very thoughtful and poignantly questions about the procedure. No parent would like to subject their young child to any surgical experience, but it seemed very necessary to provide any kind of longevity and quality of life. Surgery was scheduled for June 30, 1970 at Milwaukee Children’s Hospital. The procedure went well and the recovery was several weeks before final discharge to home. In the three weeks hospitalization, there were many adjustments in family care dynamics at home. For my older brother (4 years old) and myself (3 months of age) we were cared for by various family. My parents spend days at the hospital and slept in the hallways of Milwaukee Children’s Hospital. My father continued to work and juggled hospital, work, and home needs. At the time, there were cubby holes (6 foot by 6 foot) with curtains separated by beams (3 foot by 3 foot) where family could get some rest during the day and night as needed. This also was a main hallway thoroughfare and so privacy and quiet space for sleep was not ideal.
Our family figured out a way to make the process of surgery and recovery part of family experience. Because of surgery limiting family’s activities that summer, we still managed to have some daily events that would provide a pressure relief from the challenging but necessary hospital environment. There was an annual July 4th parade scheduled to go on downtown Milwaukee featuring the circus parade.
Our family, minus Greg, went to the parade that afternoon. In hindsight, it probably was not the most optimal choice to leave Greg alone without a family member for comfort, but we didn’t know any better at the time, nor had anyone coached us in this direction to provide emotional and social support for the patient, particularly during a stressful time and typical end age of separation anxiety (25 months of age). Greg is too young to recollect this impact on his growth and development but as a nurse today, I cannot ignore that the absence of typical family fun may play a role and will highlight the issue a little more during the next surgery.