How We're Embracing a 'New' Quality of Life for Our Medically Fragile Child During COVID-19

Quality of life. Pediatric palliative care. These are heavy terms for parents of medically fragile or terminally ill children to think about. Then, the world adds a never-before-experienced pandemic to this already challenging mix.

As parents of a medically fragile child who has introduced us to those two heavy concepts, we saw COVID-19 as another weight on our delicately-balanced scale.  In some ways, we were prepared more than the typical household. We have been using good hand-washing practices and temperature checks for years, long before it was on trend. We’ve had surgical masks, gloves, hand sanitizer, and a pulse oximeter set out like decorative objects on our end table since Maddie’s first nearly-fatal pneumonia. Social distancing is the best way to describe our behavior during the long winter months of  respiratory syncytial virus (RSV) and influenza season. So, on the one hand, we felt like “Hey, we can do this, it’s just winter again.”

However, we have a typically-developing 4-year-old who doesn’t adhere to CDC guidelines. How do we as parents keep ourselves and Maddie safe, but also not totally hinder Ava’s development and life experiences? That’s where we began to draw on our palliative care appointment discussions.

My best way of describing palliative care is this: we know that our child is not going to “get better.” We know that a number of her conditions could be fatal if an illness went too far. We also know that we love her dearly, and her role in our family is important. So, palliative care is a way of organizing our family’s goals. What interventions do we want when Maddie is sick? What additional cares are feasible at home, and what is more than we can handle? How do we give her the life she deserves, but also a life we can all enjoy together?

Every year as Maddie’s condition has become more severe, we’ve re-evaluated our decisions for our family. There’s a fine line between giving our girls life experiences that we value and putting Maddie into an inevitably risky situation. Sometimes the line isn’t there — it’s more of a Venn diagram where we all feel stuck in the middle.

We made the decision to pull Ava out of daycare — too many kids from unknown families. The downside — where’s the socialization that a young child so desperately needs? We looked for a “safe family” that we could continue to have play dates with, allowing the peer play she craved. We also made the decision to put Ava in a small weekly dance class, with fewer than 10 people in a spaced-out studio. Is it possible that she could contract COVID from one of those people during her 45-minute class? Yes, unfortunately it is. But, did we want her to have a group experience this summer before she headed off to 4K, also yes. Our family weighed it out, and this tipped our scale to a feasible risk.

With Maddie, some things haven’t changed. She’s been on a home-based service IEP the past two years. However, when schools went virtual, kids like her were left to either be placed in front of a computer screen, or have parents that magically transformed into PTs/SLPs/OTs, while also parenting and caring for medical needs. In our house, neither happened. We read books, Maddie played with Ava, and we performed daily care. However, in my gut, I felt like this wasn’t best for her quality of life. She certainly wasn’t at risk for COVID during these mom-led toddler time activities. But, she also wasn’t working on her vision or communication books either. We never know how much time Maddie has left with us. We also know that COVID is going to be around for awhile, and doing “nothing” to further Maddie’s development just wasn’t an option to us. So, after involving our pediatrician and school district personnel, we came to an arrangement of “yard-based” services. We’re six feet apart, wearing masks and gloves, with staff guiding myself or Maddie’s nurse through her educational activities. This was a good compromise between protecting Maddie from COVID and also giving her experiences that we value. Risk-benefit analysis complete.

Am I claiming to have life all figured out during this pandemic? Absolutely not. But sometimes one small victory can really boost your confidence in navigating life with a medically fragile child. I’m also not too proud to admit that I make a mean pro/con chart. Maddie’s life certainly has challenges, but it’s also prepared us to navigate yet another unforeseen circumstance.

When you’re a “medical parent,” each season is predictably unpredictable.