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Published April 18, 2012, 11:30 PM

VIDEO: The six-week nightmare: How Tommy's family got him back (Part 2 of 2)

HAWLEY, Minn. - Kalvin Greuel’s father used to tell him that no matter how bad things were, no matter how low he fell, nobody could take away his family.

By: Marino Eccher, INFORUM

HAWLEY, Minn. - Kalvin Greuel’s father used to tell him that no matter how bad things were, no matter how low he fell, nobody could take away his family.

“He’d say, ‘Whatever happens, they can’t take your kids,’ ” Kalvin said. “But they can.”

In June 2010, Kalvin’s son Tommy, adopted at birth nine months earlier, had a seizure. It was the latest in a long line of medical issues for Tommy, who had struggled since birth with weak connective tissue and a skull too big for his body and growing all the time.

But the hospital staff suspected his eye hemorrhages and brain bleeding were instead signs of a shaken baby, and contacted Clay County Social Services. A week and a half after the seizure, the agency claimed Tommy and his older sister, Kaylee, were living in a dangerous environment and took custody of both children.

Kalvin and Leah had never run afoul of the law, save for the odd traffic ticket. They’d never set foot in court, except to get married and adopt their children. They had been on mission trips and were active members of their church. As their lawyer would later tell a judge, “these people are not frequent fliers in the courtroom.”

And so when they were accused of the unthinkable, Leah said, “It was a nightmare.

“This is America,” she recalls telling anyone who would listen. “You cannot take kids away without a reason.”

A six-week nightmare

Kaylee was returned to her parents after three days after medical exams turned up no evidence of abuse. But Tommy stayed in foster care.

Kalvin didn’t mince words on what they were going to do about it.

“He said, ‘You get him back,’ ” Leah said. “ ‘You use whatever money, you drain our savings, you go get a loan. Do whatever it

takes.’ ”

She quit her job as a nanny to take up the fight for Tommy full time. The family hired Brian Toay, a Fargo lawyer, to take the battle to court.

Toay cautioned the family that he hadn’t heard of someone successfully challenging a shaken baby case. But it was apparent to him from the start that Tommy’s circumstances were unique.

“His medical records made it clear that he was not a normal child,” Toay said. He laid out Tommy’s history of health problems and the family’s frequent, diligent pursuit of care as evidence that harming the child was the last thing Leah and Kalvin would do.

But Clay County’s Child Protection Services – which told The Forum it could not comment on any specific cases – wouldn’t listen. Instead, the agency said the Greuels were fabricating Tommy’s medical issues as a cover for their own abuse. Social service workers canceled Tommy’s scheduled appointments with out-of-town specialists, claiming he didn’t need them.

When that happened, Leah said, “I went berserk.”

So did Toay, who was dumbstruck by the agency’s intransigence. He was used to the county fighting to make sure his clients took care of their children, but not the other way around.

“For us to have to go in and have a contested hearing and get a court order for that was bizarre,” he said.

Even after a judge ordered Child Protection to proceed with Tommy’s medical visits, the agency continued to produce reasons why it couldn’t. At various times, it claimed the visits were too expensive, Tommy was not properly insured (even though he was), treatment was unnecessary and travel plans to hospitals were unworkable, according to Toay and Leah.

“They just kept coming up with different excuses,” Toay said.

Meanwhile, Leah and Kalvin felt like their lives were unraveling. They were facing potential criminal charges for abuse. One day, a woman drove up to the house in a black truck and started taking pictures of the house. She wouldn’t tell Leah who she was, and they never saw her again.

“We didn’t trust people,” Leah said.

The agency also scheduled a procedure for Tommy to have a shunt placed in his head to drain fluid – an appropriate treatment had he been shaken, but one that could otherwise make his condition worse.

A week before Tommy was scheduled for the shunt surgery, Leah and Kalvin made a last-ditch appeal to block the procedure.

“At that point, we weren’t worried about clearing ourselves,” Leah said. “We were worried about damage being done to Tommy.”

Lisa Borgen, the Clay County district judge hearing the case, decided she’d heard enough. An early diagnosis that Tommy had a broken wrist and a fractured skull – a lynchpin in the abuse claims – was found to be wrong. None of Leah and Kalvin’s supervised visits turned up any hint of misconduct. And in six weeks in foster care, Tommy’s head had grown two centimeters.

On Aug. 18, 2010, Borgen ruled it was time for Tommy to go home.

An answer, finally

But when the Greuels got Tommy back that afternoon, that’s not where they took him. Instead, they headed straight to Children’s Hospital in St. Paul. They were still trying to figure out what was wrong with their son.

The hospital couldn’t tell them. They referred him to Gillette, a children’s hospital in the Twin Cities, which produced the same result.

Stephanie Hanson, Tommy’s primary care doctor at Sanford Health in Fargo, said she’d never seen anything like it – and seldom saw a case of any variety that was so hard to solve. It was so rare that she couldn’t even put a one-in-a-pick-a-big-number designation on it.

“It was out of my league to make that diagnosis,” she said.

Finally, last fall, the Greuels landed at the Mayo Clinic. After a 12-day stay, they got the closest thing they’d found to an answer.

The condition was called benign macrocephaly – essentially, an abnormally large head. For unknown reasons, Tommy’s skull had grown much faster than his brain and the other connective tissue in his head. Every time his head was jostled, his brain would bump into the inside of his head, causing concussion-like symptoms.

It didn’t give a complete picture, or account for symptoms like Tommy’s soft-tissue weakness or excessive bleeding. But it explained his nausea, and his poor balance, the head trauma found after his seizure. It also explained why solutions they’d tried earlier, like a helmet, didn’t work.

“All these parts of Tommy made sense,” Leah said.

The Mayo Clinic doctors told her if the diagnosis is right, Tommy’s body will catch up to his head. It’s now the size of an 8-year-old’s at age 2½. It’s unclear when that will happen – some cases have continued into the teens – but if it does, Tommy will lead a relatively normal life.

And if it doesn’t?

“We’ll have to deal with that then,” Leah said.

A phone call, a calling, and a pool

The prospect of long-term improvement heartened the Greuels. But in the short run, they still had plenty to worry about.

It still wasn’t safe for Tommy to get around like a normal toddler. He couldn’t travel without getting carsick and needed to stay in a wheelchair because a fall could kill him.

The house would need to be redone to accommodate a ramp and other changes – Tommy was getting too big for a baby bed or to carry up the stairs. Legal, medical and travel bills were mounting. They’d already gutted most of their savings to pay for the court fight and, to add insult to injury, had to pay for the time Tommy was in foster care.

Oh, and they needed to build a swimming pool.

The Mayo Clinic doctors said Tommy should get a minimum of 10 hours of water therapy a week – he could get exercise and tone his muscles without fear of bumping his head. But driving him to town from their rural Hawley home that often would just make him sick and would leave Kaylee in a daily lurch.

The Greuels were trying to figure out how to get Tommy what he needed when they got a phone call from Lesli McCully, who knew them through Calvary United Methodist Church in Fargo. She’d been in touch with the family during their court fight because her sister had also been falsely accused of child abuse.

This time, McCully felt like she’d been struck with a sudden calling.

“I felt like God was telling me, ‘The Greuels need a fundraiser, and I think you can do it,’ ” she said.

She told Leah the church community wanted to help and asked what the family needed. At first, Leah didn’t tell her because she thought the answer – the pool – was too big to ask for.

But if Tommy needed it, she decided, so be it.

“I said, ‘What will change his life is someplace where he can move around, splash around, dunk his sister, and release some energy without having to be strapped in all the time,’ ” Leah recalls. “Lesli said, ‘Well, then that’s what we’re going to do.’”

Once the plan was set in place, it unfolded with dizzying speed and uncanny providence. Steve Olson of Olson Pools and Spas in Hawley provided the 10-by-20 pool at cost (still $20,000, but a steep discount nonetheless).

Sean Van Enk of Van Enk Electric, a lifelong friend of Kalvin’s, donated the wiring. Other members of the community pitched in materials for the pool house. Leah’s father, a carpenter, put up the walls.

Two dozen people showed up to help build it. “They started on the walls on Friday morning, and by Sunday afternoon it was shingled,” Kalvin said. “God just provided the right people at the right time.”

Dreaming of the future

McCully and the church figured they’d help with the pool right away and figure out how to pay for it later. To help offset the costs of the project and the Greuels’ expenses, they’re holding a fundraiser at the church Friday.

The pool, finished just before winter set in last year, has done wonders for Tommy, Kalvin said. His balance and strength are improving, and he loves being able to move without chairs or restraints.

“He’s just so excited to go swimming,” he said. “He can just go where he wants to go.”

He isn’t out of the woods yet. He’s nearly blind in his right eye because of scarring from tissue injuries. He can’t take more than a few steps without falling over, and he’ll be in a wheelchair for years to come.

Even at 2½, he understands he can’t do what the other kids do. Sometimes he gets sad or mad about it, but his parents redirect him to other activities – singing, reading and “Veggie Tales” are among his favorites.

Leah and Kalvin have tried to give Kaylee as normal a life as possible, but she understands her brother’s limitations.

“She’s like, ‘Tommy, you can’t do that or you’ll bonk your head. If you bonk your head, you’re going to get sick again,’ ” Leah said.

Talking about the court battle still makes Leah mad. Talking about Tommy’s health evokes memories of fear and uncertainty.

But only one topic makes her choke up: what Tommy will do when he gets better.

“He will be clumsy, and he’ll have to work to walk right and stumble around, but he will,” she said, fighting back tears. “He might be 8 or 10 years old before he gets to ride a bike, but he probably will.”

If you go

What: Tommy Greuel Benefit

When: 5 to 8 p.m. Friday

Where: Calvary United Methodist Church, 4575 45th St. S, Fargo

Info: A pasta dinner will be served for a free will offering, followed by a silent auction. Proceeds will go toward medical and in-home therapy costs.

For more information: Contact Lesli McCully at (701) 200-8571 or ndmccullys@midco.net.

To donate: Contact State Bank & Trust at 3100 13th Ave. S. or visit dakmed.org/lendahand and click ‘Donate.’ The Dakota Medical Foundation’s Lend a Hand program will provide up to $5,000 in matching contributions.



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Readers can reach Forum reporter Marino Eccher at (701) 241-5502

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