Fear and Uncertainty: A New Health Reality for Families

COVID, Flu, RSV and More – Parents and Providers are on the frontlines of decision.

It started shortly after Halloween when my daughters developed a nasty cough and head cold symptoms, prompting my wife and me to take them in for testing. We made a hasty appointment at the pediatrician after regular business hours. They had us park outside and enter through the back door directly into an exam room, isolated for potentially infectious cases.

We were all fully masked – the four of us and the nurse – and she took their blood pressure, checked their pulses, listened to their breathing and hearts, then stuck swabs up my girls’ noses to run the full battery of tests: COVID, flu, and RSV. Sure enough, both girls were positive for RSV. Not great, but not unexpected given how rampant it seems to be.

We kept them out of preschool for several days, and they steadily improved enough to go back (albeit fully masked) after a week or so. My younger daughter bounced back and was her usual self very quickly, but my older daughter wasn’t quite right. Her appetite didn’t return, and she grew more lethargic day after day.

By the middle of November, it was clear that something else was going on.

Normally a precocious, inquisitive, loving, and energetic little creature who started talking from the moment she opened her eyes in the morning and didn’t stop until she shut them at night, she was utterly exhausted all the time. Worse, she began to complain of headaches on a near-constant basis and when I asked her to point to where she was feeling the most pain, she’d pat the top of her head.

She would bounce back for an hour or two periodically, acting relatively normally and eating a bit, making her mother and I think that maybe the worst was behind us. But she would invariably regress shortly after that and sleep almost constantly. She’d wake up crying in the middle of the night, holding her head and telling us the pain woke her up. She would sleep nearly all day long, laid out on the couch in my office while I worked, barely waking up for more than a few minutes to drink a bit of water or Pedialyte and nibble on some toast or crackers.

She would spike brief fevers, never more than a degree or two. At one point, my wife performed a simple pupil dilation test, holding her hand in front of one of my daughter’s eyes and moving it slowly away. My daughter screamed in pain. Very worrying.

We had called our pediatrician earlier for guidance but couldn’t get an appointment.

We didn’t see any improvement by the Friday before Thanksgiving, so I brought her to a local urgent care.

Preparing for the Worst, Hoping for the Best

Normally chatty and engaged in the car, asking me to play her favorite songs so she could sing along, she was instead completely silent, her eyes barely open and her head tilted to the side resting on the car seat, holding her current favorite stuffed animal tight. It happens to be a gray dragon this month.

I carried her into the waiting area and signed her in. She was conscious but limp and not responsive as she sat in my lap, waiting. Our turn came, and she perked up a bit due to the anxiety I know she was feeling – she’s always very concerned that shots might be involved in a visit to a doctor.

The nurse practitioner we saw was wonderful, and deeply concerned, given my daughter’s symptoms. She did all the routine testing and told me that if she couldn’t find anything immediately responsible for her symptoms, it would be wise to take her to our local children’s hospital. Fortunately, the ear exam revealed a likely culprit – a nasty double ear infection. Her right ear was a particularly acute case. Even so, after prescribing amoxicillin, the nurse practitioner advised that if my daughter’s symptoms didn’t improve in 10 – 12 hours, we should take her to the hospital.

I went to pick up her prescription and was told that the pharmacy didn’t have any supply of amoxicillin. There’s a shortage. They called and got a different medication approved that they had in stock. I took my daughter home and gave her a dose around 11 am, and she slept the rest of the day in my office. After another dose, she perked up a bit, as she had before. We thought the worst was behind us.

But again, she slid back the following day, and by dinner time on Saturday, she tried to eat some toast with peanut butter and nearly vomited. My wife and I arranged childcare for our youngest and took our oldest to the local children’s hospital.

We sped to the emergency room. As we often do with our girls when they’re in an new situation, we tried to explain to our daughter what was about to happen to hopefully allay some of her anxiety. But in truth, we had no idea what to expect. Would she need to be admitted? Did she have meningitis? A brain tumor? Something else entirely? Or was this just a particularly severe ear infection causing all her distress?

We ended up spending about five hours in the emergency department. Our girl tested negative for COVID and the flu. Neither meningitis nor the neurological screening raised any red flags. The doctor told us that her right ear contained just about the worst infection she’d ever seen and that she likely also had strep throat. Continuing the antibiotics, she was already taking was, therefore, the best option.

We dodged a bullet. It could have been so much worse.

Making Sense of the New Reality

When I was a kid, I got bronchitis almost every year. Like clockwork, I’d come down with a head cold that would migrate to my chest and give me that telltale, nasty cough for a few weeks. I’d get some meds, puff on an albuterol inhaler if needed, and go along my merry way. It wasn’t pleasant, but it was manageable for my parents and me.

Today, a global pandemic is still very much ongoing. We have unusually high numbers of RSV cases. Medication shortages. Widespread vaccine hesitancy or outright rejection. Polio resurgences. It’s enough to concern any parent, and it feels like that concern is here to stay. I know there’s always a certain degree of parental anxiety around our children’s health, and perhaps we’re prisoners of the moment. Still, it feels more pointed now than it did for previous generations.

We’re at a tipping point. The way we’ve done things historically fell apart and proved wildly inadequate in the face of COVID, and we’re still reeling, figuring out what it means for us going forward. Telehealth is wonderful in some cases, but it took a doctor looking directly into my daughter’s ear to identify her issue. Hospitals continue to be overwhelmed; they’ve set up a tent hospital near me to deal with all the RSV cases.

I don’t know the kind of world my daughters will grow up in. What health challenges will they face? How can I protect them when things are shifting so rapidly and unpredictably? I never dreamed that a medication prescribed to help my kids would be flatly unavailable – it’s nothing I ever had to deal with when I was young. Fortunately, there was an alternative, but will that always be the case? I can’t say for sure.

It’s next to impossible to get an appointment with a primary care doctor, even in a near-emergency. They’re scheduling months out. Urgent care centers help fill gaps, but they can’t be the only solution. Insurance tied to employment and the politicization of healthcare threatens to keep huge swaths of people from the services they need to live better lives.

My kids are under threat, and we have a healthcare system stretched too thin to serve them should they need it. We must defragment our healthcare ecosystem, make it affordable and accessible, leverage digital tools where appropriate, and create a new healthcare paradigm with the patient at the center.

We must do better. We must find a way to let parents like me sleep a little more soundly at night.

I have two preschoolers. I could certainly use the rest.

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Editors ChoiceFear and Uncertainty: A New Health Reality for Families
Cullen Burnellhttps://www.finnpartners.com/bio/cullen-burnell/
Cullen Burnell is Vice President and Chief of Staff to the Chair, Global Health and Purpose at FINN Partners. His previous professional experience includes stints in media, government, and BigLaw. He resides in Connecticut with his wife and two daughters.
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