The stress of improvising hospital-level child care at home

As a researcher and medical device designer, I’ve spent years immersed in pediatric hospitals and homes, observing and listening. One moment from my recent research still keeps me up at night.

A mother described how her toddler stopped breathing one afternoon at home. Instead of calling 911, she grabbed a faulty suction machine, the only one Medicaid had provided and prayed it would keep working long enough to clear her son’s airway. The hospital-grade unit she needed exists, but her Medicaid plan wouldn’t cover it. Thankfully, it worked — this time.

That story is not an outlier. Over the past two years, I interviewed 20 families across the country caring for children with tracheostomies — surgically created airways that allow them to breathe — along with clinicians, hospital case manage