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It was 9 a.m. on a Sunday in May, and Chloe Mead was already worn out.
In her living room, she cradled her 7-year-old son, Henry, supporting his head with one hand and helping him toss a ball with the other, careful not to disturb the ventilator that was keeping him alive. A nearby monitor tracked his blood-oxygen levels and a pump was at the ready should his tracheotomy tube need cleaning. In the corner, her 4-year-old daughter was building a pillow fort.
“I need, like, five extra arms,” she said.
Ordinarily, she wouldn’t be by herself. Since infancy, Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder, has had intensive, round-the-clock nursing at home, with Ms. Mead and her husband serving as fallbacks when a nurse unexpectedly cancels a shift.
But the recent shortage of home-care nurses has forced the couple, who live in Queens, to handle longer and longer periods on their own — as many as 36 hours at a stretch. That morning, her husband, Andy Maskin, was catching up on sleep so he could take that night’s late shift, from 2 a.m. until 7 a.m., when he begins his own workweek.
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Chloe Mead and Andy Maskin tended to their 7-year-old son, Henry, who requires 24-hour medical care. Credit…Brittainy Newman for The New York Times
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