A Fargo mother’s struggle to care for her severely disabled son
FARGO — Cash Hatlen was a normal, bouncy baby for the first six weeks of his life. There was no hint that anything could go wrong. Except, in hindsight, there was one telltale sign. He spits up a lot.
But all babies spit up, after all, and his mother saw nothing unusual about her fifth child. Nothing unusual until her cousin, who was visiting, abruptly noticed that something had gone very wrong.
"Cash doesn't look right," the cousin said, with evident alarm in her voice. His mother, Kelly Hatlen, rushed to his crib and it was immediately clear that he was in danger.
"He was blue," she said. "He had stopped breathing." She paused a moment. "He was gone." But Kelly Hatlen is not one to meekly accept what fate has in mind. She yelled for her husband, Dave, a Navy veteran, to come help.
"Do something!" she pleaded to her husband as family members tried to resuscitate Cash while they waited for an ambulance to arrive.
As luck would have it, a police officer was nearby and took over the resuscitation efforts.
The officer's efforts succeeded.
"He saved his life," Hatlen said. In the panic of the moment, she didn't get the officer's name. "I just want to say 'thank you.' "
Another lucky element. Because of the cousin's visit, Kelly Hatlen went out earlier that night and was still up when Cash turned blue after midnight, when everyone normally would be asleep.
It would soon be clear, however, that Cash's struggles had just begun. He would spend three weeks at Essentia Health. Then he was transferred to Children's Minnesota in Minneapolis, where he would spend two years in the hospital.
Several more times, he almost died.
The doctors determined that the problem was laryngomalacia, a floppy airway. Floppy tissue above the vocal cords falls into the airway when the infant breathes in. The condition is not uncommon, but usually is mild or moderate.
Not in Cash's case. As a result, his life and the lives of his family are forever altered.
People surround themselves with a bubble of invincibility, a psychological shield that allows them to ignore the frailty and unpredictable vulnerability of human life, Hatlen said.
It's a coping mechanism. And it's an illusion.
"Our lives changed in one night," she said. "One night everything changed. I don't live in that safe space."
'We did it'
Cash cannot swallow. He cannot speak. Nor can he walk. He is fed from a feeding tube. He requires round-the-clock nursing care. A nurse has to regularly use a suction device to clear his airway. At night he requires a ventilator to breathe.
But he is at home, with his family, living as normal a life as his parents, siblings and caregivers can provide.
His bed occupies space in the Hatlen home where a dining room table normally would be found. The bed is surrounded by medical equipment, including a ventilator, and supplies, giving it the appearance of a makeshift hospital room with a lot of homey touches.
A whiteboard at the foot of his bed, hanging from the back of a kitchen cabinet, is full of reminders for appointments and to manage Cash's care: remember to flush his feeding tube, flush his meds, monitor temperature, reorder his medical supplies, keep his nurses' schedule.
It's all necessary because Cash suffered brain damage when his airway closed and he stopped breathing that fateful night when he was six weeks old.
Now 6 years old, he remains severely disabled. But he attends school at Longfellow Elementary, and his family regularly takes him on outings. This summer, he joined the family in attending the Fargo Airsho, and the family regularly goes on walks in their Fargo neighborhood, with Cash riding along in his little red wagon, often with his heart monitor tucked inside.
Although Cash can't speak, he is able to communicate, his mother said. He gestures and reacts when his name is spoken.
"He'll point," she said. "He'll let you know."
He also responds to familiar faces, and to music. "He really likes Pearl Jam," Hatlen said. Lady Gaga's music makes him excited. "He's a little rocker."
Cash's needs place him at the center of the family. Vacations don't happen, and Hatlen worries that her other children are neglected. But, she adds, they never complain.
"They're the real champs," she said.
It wasn't easy to arrange for Cash to receive nursing and other support to enable him to be at home with his family.
With the cost of his hospital care at Children's accumulating at the rate of $250,000 per month, the hospital began pushing the Hatlens to discharge Cash to an institution. But Hatlen resisted, pushing instead for him to come home.
On her side: a Medicaid waiver called the Katie Beckett waiver, named after a severely disabled Iowa girl, allowing Medicaid to cover the cost of a child's care, regardless of the family's income, if the cost of the care at home is equal to or less than the same treatment in a hospital.
Finally, with help from advocates who included Julie Beckett, Katie's mother, and lots of meetings with state insurance and human services officials, the Hatlens were able to arrange for Cash to come home.
On the ambulance ride back to Fargo, a paramedic announced when they had reached Alexandria, Minn., roughly the halfway mark.
"I remember looking at him thinking, we did it," she said.
'A lot of Kelly stories out there'
Cash's illness has strained the family's finances, even though they have health insurance through Dave Hatlen's job as a construction foreman.
Still, the family's monthly premium is $1,600, and there is a never-ending stream of bills for costs not covered by insurance, including medical supplies and accessories. The bills just keep stacking up.
"It's non-stop," Kelly Hatlen said. "We're just waiting for the bottom to fall out."
A moment later, her mood brightened. "We're here," she said. "It's not that you give up. There's nothing you can do."
Because of Dave Hatlen's earnings, the family doesn't qualify for subsidized health coverage under the Affordable Care Act. But Kelly Hatlen credits the law, passed in 2010, with saving her son's life.
She read the entire law—all 2,000 pages of it, twice—at her son's bedside when he was in the hospital and she was desperately searching for solutions.
"There's a small clause that says you can't drop a child out of a hospital," she said. Without the law, she said, "He wouldn't be here."
The Hatlens are hardly alone in their struggles, although Cash's case is unusual.
"There's a lot of Kelly stories out there, actually," said Donene Feist, executive director of Family Voices of North Dakota, a group that helps families with special needs children.
In North Dakota, 18 percent of children have a special health care need, Feist said. For those families, maintaining access to health care is vital.
"I would hope that our policymakers realize that," she added.
In the face of so many obstacles, Hatlen's stubbornness has been her ally. She often thinks of that fateful night, and holding Cash's limp body. Today, she said, he is strong and healthy in many ways, despite his obvious challenges.
"He was dying," she said. "A lot of people thought I was in denial. I was not giving up."