What Patient Engagement Could Be

A few weeks ago, my husband and I were out with our kids celebrating “local summer,” those few weeks after Labor Day when the weather at the New Jersey shore is still beautiful, but the crowds have thinned out.

We went to an outdoor restaurant, thrilled that there was no wait for a table. And when I saw that there was a family with a newborn, I was even more elated — if they have a baby, chances are they won’t complain about the noise coming from my toddlers. But when I looked closer, I saw something that took me by surprise. What at first appeared to be a diaper bag hanging on the mother’s shoulder was a device I knew well: a cardiorespiratory monitor. It was the same model we had three years ago for my son, Austin.

And although the mother looked like a pro as she maneuvered into her seat, taking her baby out of his Bjorn while gently placing the monitor on the table, I had a feeling that she could use some reassurance. So Dan and I introduced ourselves, sharing right away that we were alumni of the monitor club.

“I see the technology hasn’t changed in three years,” I joked.

“Three years?” said Jason, the baby’s father, gesturing to the machine, which looked like something out of an old sci-fi movie. “Looks like it hasn’t changed in 30 years.”

One thing I was hoping had changed, however, was the support available for parents. For those who aren’t familiar, an apnea monitor is a machine that uses stick-on electrodes to detect episodes of bradycardia or apnea. If the heart rate slows down or the chest stops moving, it emits an extremely loud beeping sound.

It’s the scariest noise you’ll ever hear, trust me. But the ear-piercing sound doesn’t always mean the infant is in distress. It may mean the monitor can’t pick up a signal, which can happen if the electrodes are positioned incorrectly or if they’ve come into contact with lotion or spit-up. It may simply mean the battery is running low.

But whatever the cause, to a new parent, it’s beyond stressful.

You know the expression that babies don’t come home from the hospital with a manual? Well, in cases like this, maybe they should.

Only Dan and I didn’t get a manual — what we got was an hour-long education session during which a representative from the home care provider briefed us on the basics of how to use the monitor. I scribbled notes furiously, still trying to digest the fact that my baby boy was going to be attached to a machine for several weeks — possibly months. And although the representative was thorough, I was still completely overwhelmed and terrified. I knew that as soon as we got home and had to deal with the wires and electrodes on our own, I’d have a million questions.

Sure enough, that first night the monitor went off more than a dozen times, all of which were false alarms. The electrodes wouldn’t stay in place, and it turns out the belt we were given was much too big for my little guy. Eventually, we managed to get it tight enough to keep the sensors in place (after a brief moment in which I contemplated throwing the monitor out the window).

But we weren’t out of the woods by any means. When I was getting Austin dressed the next day, the beeps resumed, and I called the company looking for assistance. Turns out I’d have to keep looking. Not only did it take hours to get a return call, but when I did, the information wasn’t helpful. Neither was Google (which, by the way, should be banned for parents of newborns).

What was helpful was calling up another premie mom I had met, who talked me through the process of securing the band and told me to wash it every few days by hand. It was exactly what I needed.

But now, when I look back, I realize I could’ve used a lot more support, like a contact person at the home health company who could answer questions at any hour. Or a website (like this one) with instructions, an FAQ section, and useful tips. Or maybe even a portal where I could access the monitor readings from my baby’s last appointment and track his progress. Or a support group where I could speak to other moms and get tips on where to find baby outfits with snaps.

It’s funny, we always hear about how challenging it is to get patients to log into a portal. Well, if I had been told about a portal for post-NICU moms — or even new moms, for that matter — I would have lived in it. Maybe it should be less about signing patients up, and more about reaching out to those who need support.

When I think about that mom I met at the restaurant, who struggled with the monitor just as I did, I wonder if we’ve made any progress in the past three years. I know that seeing my energetic little boy gave her hope and assured her that one day she wouldn’t need that shoulder bag, and at least that’s something.

But I can’t help but think there’s more we can do than just offer hope.