Spend a few minutes with 6-year-old Avery deGroh, and you will likely understand why supporters of a complicated piece of legislation brought her to the nation's capitol twice recently to share her story.
When she was just two, Avery got a defibrillator to combat Long QT Syndrome, a hereditary heart condition shared by her mom, Molly.
"The first symptom of Long QT Syndrome is usually sudden death," Molly deGroh said.
She and husband Alex say they rested easier with the device in their daughter, until almost precisely one year later when their daughter started screaming while playing in the basement.
"All of a sudden I heard this blood-curdling scream, " Molly recalled.
She picked up Avery, and says she could feel electricity pulsing through her body.
The family said Avery's device started firing relentlessly that day, firing nine times in about a half hour.
Doctors immediately turned the defibrillator off, but what the McHenry County family didn't know was that Medtronic, the device manufacturer, had received other reports of shocks in patients and soon issued a voluntary recall.
Avery had already had surgery to replace the device by the time Medtronic revealed the numbers: 2,200 injuries and 13 deaths connected with the defective parts.
The family is on the hook for the $30,000 surgical bill. Their insurance company told them that Medtronic should pay the bill, but Medtronic told the family they voided the warrant by choosing another company's defibrillator and leads for the girl's second implant.
The lawsuit they filed to recover the expense will likely be dismissed -- along with thousands of other patients' bills -- due to a recent United State Supreme Court ruling that protects medical device makers from lawsuits.
The Medical Device Safety Act, now working its way through Congress, would restore victims of defective devices the right to sue.
It could come up for a vote this fall.
