Opinion: A broken system forces parents to DIY hospital-level care for their medically complex children

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.

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