Mark Weissinger: Notes from a CHD Dad
Mark is the involved father and daddy of two boys. He is in nursing school. He helped create the nation's first CHD awareness license plate in Utah. He loves outdoor adventures and fun and likes to concentrate on the fun.
POSTPARTUM: Our second child was born full term at 8# 11 oz and 20.5 inches long, identical metrics to his 2-yr older brother, just after midnight on a Monday in January 2012. Owen’s labor and delivery were rapid, and he came out screaming just a couple hours into the Chinese New Year (year of the Dragon), that Tuesday morning. At birth, one nurse once said she heard a murmur and nothing more ever came of from that observation. In hindsight, always so clear, there were signs that something was amiss, but they went unnoticed as Owen was basically asymptomatic to his hypoxia. Given his vigor and apparent health, we were discharged within 18 hours of admittance (on that Tuesday evening) with no in-hospital overnight stay...all seemed well. When mom’s milk came in Wednesday, Owen latched and fed well...initially, but on Thursday and Friday morning his feeding sessions were numerous but became brief and when he screamed, his color shifted toward pallor. He was sleeping a lot Thursday and his routine day-four postpartum doctor visit was already scheduled Friday afternoon, so my wife planned to share those observations then.
DAY 4: In his day-four postpartum check-up, while cheerful, smiling, apparently not distressed, and otherwise asymptomatic, Owen’s room-air oxygen saturation was 66% (95-100% is normal, a COPD patient is distressed in the low 80% range) on two different clinic pulse oximeters, so the nurse and doctor escorted him to the ER in of our local critical access, regional hospital. I had another engagement that morning and because things seemed otherwise fine with our new baby, I missed the appointment.
GRANDPARENTS: My parents were driving 1,000 miles to meet the new baby and were about 45 minutes away when I’d talked to my wife on the phone to ask how the doc visit went. “We’re in the E.R. and a helicopter is coming within the hour to take Owen to another hospital, if you want to see him before he leaves come straight to the ER,” was her answer. The helicopter dumped fuel to accommodate my wife, so she could be with Owen on his first life flight.
LIFE-FLIGHTS 1&2: My parents came straight to the hospital where they briefly met Owen as the flight crew packaged him into an incubator and took him to the helicopter; my wife was allowed to accompany Owen on his first life-flight. I then escorted my parents to our home and asked them to care for our 2-year-old while I packed an overnight bag and at 7:00 pm drove two hours to the other hospital (in another state) where Owen had been stabilized and given a diagnosis of “Truncus arteriosus.” I was there when he was later but similarly packaged and sent by fixed-wing aircraft, my wife accompanying him on his second life-flight too, to Children’s Hospital. That night, I returned home, slept a few hours and on Saturday I packed another suitcase, asked my parents to care for our 2-yr old son for an undetermined time and then drove six hours to Denver to join my wife and 5-day-old Owen in the Neonatal Intensive Care Unit (NICU) some 360 miles from our home in SE Utah.
INVOLVED: One thing I clearly remember about filling out hospital admittance paperwork was a single check-box regarding my role as the father… <INVOLOVED> About the only data necessary for the father was whether I was “involved.” YOU BET I’M INVOLVED!!!
HOSPITAL: Upon arrival at Children’s Hospital, Owen had a detailed cardiac ultrasound which revealed his final diagnosis, Tetralogy of Fallot (TOF) with pulmonary atresia (PA) and patent ductus arteriosus (PDA). As my wife was understandably entirely focused on our 5-day-old son, hooked up to medication pumps and a feeding tube while under Bili lights, wrapped in swaddles and eyes covered, I took the role in health promotion and coordinating life activities: meals, grandparents (both sides), our 2-yr-old son, transportation to and from the hospital and information dissemination to family, friends and our family of friends… My wife never left Owen’s side for the week in the NICU. After Owen’s open-heart surgery (at ten days old), my wife and I eventually did make time to leave the hospital campus for walks and dinner. My parents arrived the next day with our 2-yr-old and my wife’s parents had plane tickets Moab but were able to change them directly to Denver instead and met us all at the hospital. I was able to take our 2-yr-old and all the Grandparents to the zoo, Children’s Museum, and the Museum of Nature and Science during their time there. Family is support! My wife’s parents left a day or two later and my parents drove our older son back home while my wife and I remained for another week until discharge and final release to return home with Owen on oxygen.
DEALING & INVOLVEMENT: I have a biology education and background, so I dove into my son’s diagnosis and prognosis. I held educated, informed conversations with all his care providers who would tolerate my inquiries. I wanted to know the minutia and the medical specifics of his anatomy and presentation of his diagnosis (TOF-PA with PDA), although the incidence of TOF is high, Owen’s presentation with PA and PDA (which can arguably be described as pentalogy of Fallot) is a much rarer CHD (less than 1: 10,000) than TOF with typical pulmonary stenosis (narrowing of pulmonary artery). Congenital heart defects, while the most common birth defect and responsible for more deaths than all pediatric cancers combined, are surprisingly unknown to the public. Once we were into the CHD world I learned it’s a world unto its own and I quickly learned about many people close to me who were also affected by a CHD. 1-100 births add up quickly and as it turns out everyone knows someone, or several people affected by congenital heart disease…… Once I started learning about CHDs I quickly realized I/we were not alone in this dark hole but rather in company of many who understood and could help emotionally, spiritually, logistically and with tips and tricks for life with a CHD. As it turns out, the behaviors I demonstrated, redirection and education, are healthy ways to deal with stress. It is not only a way of accepting but also embracing such a life-altering diagnosis as a new parent. <INVOLVED> (per the paperwork)? As a father and dad, I am much more than just <INVOLVED>! My role as father and dad is foundational and cohesive to this family. This was my time to demonstrate my strength, resilience, support, resolve, compassion, tolerance, emotion, love and care.
For all the CHD fathers out there, the dads and daddies, there are resources available: support networks, CHD groups, other dudes who’ve been there, are going through it and who will be there too, you are not alone; we are not islands in the dark, we are strong, collaborative, supportive, foundational and cohesive. We are here to help and support each other!
And for all my strength, resolve and support, Owen is the dude who has shown me strength, compassion, tolerance, endurance, power, and love.
