Rebecca Weissinger – Small town, big support network
Rebecca and her family live in Moab, Utah. Her youngest son has Tetralogy of Fallot with pulmonary atresia. He has had two life flights, two open heart surgeries, and two cath procedures. He started kindergarten this year and has a happy heart.
We are some of the lucky ones. We live in a stunning landscape of red rocks and canyons that people travel from around the world to see. When my kids open up a geology book, they always spot at least one picture of home. The vastness, the unmarked and empty expanses are the attractions, but that wilderness looks a bit different when your family includes a baby born with a congenital heart defect.
Our town has biking and hiking trails, but no pediatricians. The family practice doc who helped at our son’s birth is the same doctor who treats diabetes and opioid addiction, cancer and the ills of aging. The nearest facility for diagnostic tests is over 100 miles away; the nearest pediatric cardiology treatment center – over 300 miles. We spend many days each year on the road to and from medical appointments, with specialists in three different towns and two states. The weight of responsibility for our son’s life can sometimes settle heavily. Is that night-time cough a winter cold or a sign of heart failure? Is this tooth infection threatening to become systemic? Answers to those questions require at best a day’s drive, at worst a helicopter or fixed wing, and the decision on whether or not to pursue them rests in our hands. Our ordinary responsibilities as parents are terrifying and humbling. We can feel very alone.
But in reality, even in our small community, we are surrounded by those who help hold us up. The nurse who first spotted our son’s low oxygen levels always gives him a quick check when we see her at soccer games. If we call the doctor and are worried that something more than a regular illness is afoot, he makes time for us. When difficult decisions confront us, our son’s doctor has always made the right call about when the care he provides is sufficient for our son, and when it is not. Friends and neighbors have cared for our cat, cleaned out our fridge, and shipped a suitcase full of clothes to the hospital. Co-workers donated hours of vacation time to cover my medical leave. I have the personal phone numbers of both our son’s cardiologist and his heart surgeon. Our support network is stretched far and wide, but it is there for us.
In the end, I think living rural with a heart kid simply throws into sharp relief what every parent faces: a precious life, held in our hands. We make all kinds of decisions that aren’t clearly right or wrong. I don’t know if it is irresponsible to live so far from definitive care or to choose our son’s specialists based on the number of miles we have to drive. I don’t know if it will turn out okay. But we each take the path that we are given, and we hope, and we love, and we begin again each day.
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Rebecca and her family live in Moab, Utah. Her youngest son has Tetralogy of Fallot with pulmonary atresia. He has had two life flights, two open heart surgeries, and two cath procedures. He started kindergarten this year and has a happy heart.
