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The Journal Gazette

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Sunday, May 14, 2017 1:00 am

Nurse sees how SADS devastates families

FRANK GRAY | The Journal Gazette

Earlier this month news broke about a Little League baseball player who collapsed in the middle of a game.

The coaches initially reported the 8-year-old Wolcottville boy was having a seizure, but it was then discovered he wasn't breathing and he had no pulse.

The boy, who hasn't been identified, was revived, and no further information on his condition or the cause of his collapse has been released.

But to Connie Goodwin, a retired Fort Wayne nurse, the scenario sounded like what is called sudden arrhythmia death syndrome, or SADS, something that is all too familiar to her.

Her husband's brother, a competitive swimmer and the picture of health, collapsed and died from what is believed to have been SADS when he was 24. A nephew who died was discovered to have had SADS, and a few years ago a niece collapsed and died from the condition.

The syndrome is actually hereditary, Goodwin said, and DNA tests and electrocardiograms can be used to see if a person has any of the factors that put them at risk for cardiac arrhythmia.

Because of that, 27 members of Goodwin's extended family have been tested, and four have been found to be at risk. A fifth person, a child, might also be at risk.

The condition is more common than most people realize, Goodwin says. About 4,000 children and young adults die from cardiac arrhythmia every year, and up to 15 percent of cases of sudden infant death syndrome are due to the condition.

As many as 1 in 2,000 people have one of several factors that can cause cardiac arrhythmia.

The problem is that few doctors know how to spot the condition, Goodwin says, and when people do collapse from cardiac arrhythmia, people think they are having a seizure. They don't realize a person has just literally dropped dead.

So for the past three years, Goodwin has been going to schools, trying to educate school nurses and to get them to educate ­coaches and teachers about the syndrome and to make sure people know how to respond when it happens – and to keep automatic electronic defibrillators close by.

Many schools have AEDs on hand, but they aren't always stored wisely. Goodwin mentioned one school that has an AED, but it's kept locked in the office of the school nurse, who works only two days a week.

The machines should be hanging on the wall in a hallway, where everyone can see them and know where they are, Goodwin says.

Goodwin says sports teams need to have AEDs on hand, on the bench, in the event a student col­lapses. When a person suffers cardiac arrhythmia, you have only 90 seconds to revive them, she says.

Having a defibrillator in another building or locked away does no good.

People who have had family members die from cardiac arrhythmia also need to know that the condition can be hereditary and can be passed on to up to half of children. They should be tested to see if they have inherited the traits that put them at risk.

Above all, people need to know how to recognize cardiac arrhythmia. They can't assume that someone has just fainted or is having a seizure.

They have to check for a pulse, Goodwin says.

Fort Wayne is lucky in that it has cardiologists who are familiar with the condition and can spot signs in an EKG, but many general practitioners aren't aware of it.

Goodwin's husband, whose sister has lost two children to SADS, said it will take an army of people to educate the public about the condition and that it can be hereditary.

In northeast Indiana, though, Goodwin is the only person she knows of trying to spread the word among the public and the schools.

For now she's an army of one.

Frank Gray reflects on his and others' experiences in columns published Sunday, Tuesday and Thursday. He can be reached by phone at 461-8376, fax at 461-8893, or email at fgray@jg.net. You can also follow him on Twitter @FrankGrayJG.