We humans are naturally social creatures. We gather, embrace and share. Unfortunately, we often share our germs. Germs are everywhere, and as a result, the parents of medically fragile children often limit their children’s interactions and essentially self-quarantine.
We do it for good reasons; the next-door neighbor’s minor cough and sniffle can quickly turn to pneumonia and a prolonged hospitalization for a medically fragile child. Hospitalizations can lead to additional infections and life-threatening illnesses. It might seem like an exaggeration, but in our homes, it’s the reality. Isolation is necessary for our children, but it causes them to miss out on parts of the human experience.
Up until just this year, we isolated our son, Richie, for the entire cold, flu and RSV (respiratory syncytial virus) season. Richie’s tracheostomy provided an unobstructed route for nasty germs to enter his respiratory tract and go straight to his lungs. To avoid the negative outcomes of respiratory illness, we took extra caution and kept him out of reach of most of humankind.
Each fall, I would begin to call the pulmonologist’s office weekly to find out whether they had seen cases of RSV. Once they confirmed a local case, all community activities ceased, with the exception of doctors’ appointments. In the spring, I would call weekly to determine whether RSV and flu cases were declining. Once we got the go-ahead, Richie could engage again with the community.
While this isolation served to protect Richie’s health, he also missed out on some of the experiences that enrich childhood, and his physical disability further complicated our ability to get him engaged. Little things like sitting on Santa’s lap, going to the mall or grocery store, and visiting the science center or museum were off limits because of the inherent risks of dangerous germs or because of accessibility issues.
As Richie’s health became more stable over the years, we have tried to widen his circle and expose him to many of these activities, still under close watch. We started with sitting in the yard and taking little walks in our neighborhood. Later, we added an Early Intervention play group that met weekly during the summer and early fall. Richie was able to play with kids his age and make friends, and I was able to make friends with their parents.
Expanding his world has been a gradual process, and the fear of germs never really goes away. We use care and good judgement to decide which activities are safe and when to do them. In the past month, Richie has been to the museum of natural history, the zoo, the botanical gardens and the grocery store. We were able to turn all of these outings into learning experiences for him, and he is eager to say hello to new people and engage with the world around him.
With the support of his physicians and the tools to maintain his respiratory health, Richie is in preschool this year. Keeping him healthy will certainly be a challenge, but we are looking forward to the growth he will experience by learning among his peers. We have an arrangement with the school to keep him home when respiratory viruses are circulating among the students, and we will continue to monitor the situation to make sure it works for his well-being. As germophobic as we have become, we recognize that engaging with others, adults and children alike, will enrich Richie’s life and create learning experiences for everyone involved.
Nikki (Charisse) Montgomery has served on the ProMedica Toledo Children’s Hospital Family Advisory Council since 2013. In addition to being a professional writer and editor, she is pursuing a graduate certificate in patient advocacy. She is a hospital volunteer and a parent mentor, and she volunteers with Muscular Dystrophy Association. Nikki and Richie are subjects in ProMedica Toledo Children’s Hospital’s Beyond the Frame photo exhibit, on permanent display inside the hospital’s main entrance hallway. Nikki is a regular ProMedica HealthConnect blogger who hopes to inspire and connect with others through theTeachable Moments series. You can follow her on social media @madvocator.