Hansen: Cardiology teams fly from Omaha to help Pine Ridge children - Omaha.com
Published Sunday, April 28, 2013 at 12:30 am / Updated at 7:35 am
Outreach mission
Hansen: Cardiology teams fly from Omaha to help Pine Ridge children

RAPID CITY, S.D. — She sits silently as the doctor from faraway Omaha takes her grandson's pulse, orders X-rays and blood tests, looks and listens and feels little Judson Two Crow's sputtering heart every way he knows how.

But now the Omaha doctor has asked for questions, and so the Lakota grandmother who has lived her entire life in the back country of the Pine Ridge Indian Reservation, like her mother before her and her mother's mother before that, lifts her eyes and nods her head.

Yes. Grandma has one question.

“We want him to start dancing,” she says in a voice barely above a whisper. “His family dances. Can he do this? Is his heart strong enough?”

Dr. John Kugler raises his eyebrows. Juanita Two Crow waits for his answer.

She knows precious little about the doctor who stands before her.

She does not know that he arose at 4 a.m. on a recent Tuesday, climbed into a six-seat Cessna and took a flight across Nebraska — a flight into an April snowstorm — to treat 2-year-old Judson, just as doctors from Children's Hospital & Medical Center in Omaha have treated hundreds of other Rapid City and Pine Ridge patients in the past three years.

During his flight Kugler didn't sleep but instead flicked on his overhead light, turned on his computer and read the medical charts of this little boy and all the other children he would see, so he would be ready.

The grandmother does not know that this cardiologist sent from Omaha — this 64-year-old who practically crackles with electricity — has worked with young children and sputtering hearts since 1979, when most congenital heart defects were an early death sentence.

She does not know that if someone would have snapped a photo every time a Nebraska child benefited from a new heart procedure or treatment or breakthrough since 1979, Dr. Kugler would have appeared, grinning his toothy grin, somewhere within the frame.

Similarly, Kugler knows only a little about the Two Crow family that sits before him: Juanita and her son Jeren, who together raise Judson, the 2-year-old with the vertical scar running like a center line down the middle of his chest.

He doesn't know that this checkup is so important to them that they holed up in a Motel 6 in Rapid City — nearly 90 minutes from their home — for the past two nights because they were afraid the blizzard would keep them away.

He doesn't know that the little boy's sputtering heart pumps special blood.

That the sick 2-year-old playing on the exam room floor is, on his mother's side, a direct descendant of the Lakota chief that her family simply calls “Old Man.” The Lakota chief who led a string of successful attacks against the U.S. Army, the warrior who turned diplomat and struggled to preserve a way of life for his people.

This patient, Judson Two Crow, is the great-great-great-great-great-grandson of Chief Red Cloud.

“Dancing?” Kugler asks in response to the grandmother's question. He grins. “We'll get to that in a minute.”

For the past three years, Kugler, six other pediatric cardiologists and five nurses from Omaha Children's Hospital & Medical Center have taken turns flying to Rapid City every two weeks. It's part of the group's outreach mission, one borne of necessity: Not a single pediatric cardiologist lives between Lincoln and Denver.

The Rapid City clinic is identical to Children's Hospital's Nebraska clinics in Columbus, Grand Island and North Platte, save for one key difference: This clinic brings the Omaha doctors in close contact with the people of the Pine Ridge Indian Reservation.

One-third of the patients the cardiologists see here are descendants of those who defeated Lt. Col. George Custer at the Little Bighorn, were herded onto a piece of government land and then slaughtered on the banks of Wounded Knee Creek, not far from where many Lakotas still live.

Today these sick Lakota children from Pine Ridge live in the third-poorest county of the 3,142 counties in the United States.

In the midst of this crushing poverty, it is dancing — it has always been dancing — that sustains.

Here, to dance is to pray, and to talk, and to feel joy and pain, and to connect with your ancestors, and to pass on something that cannot otherwise be shared with your 2-year-old grandson.

Here, dancing is so much more than shaking your hips.

For the moment, though, Kugler is far more interested in how Judson Two Crow's heart is dancing.

“Show me your tummy, remember?” he says to the boy standing on a chair in an exam room decorated with pictures of space shuttles.

Judson lifts up his T-shirt, which is adorned with baseball bats.

“You are helping me, aren't you?” Kugler says as he grasps the stethoscope with long, bony fingers and places it gently on the boy's chest.

This little boy was born with a heart too big for his body. The heart Kugler is listening to is thick with muscle — a genetic birthright — and the thickness squeezes and constricts the chambers where blood flows through.

He was also born with a condition known as WPW that caused his heart to race at breakneck speed, nearly 300 beats a minute when he was a baby. These twin conditions made Judson repeatedly faint and require hospitalization before his first birthday.

The Omaha doctors have already pulled the little boy back from the brink with surgery, medicine and a defibrillator installed into his tiny abdomen — an aggressive medical step in a 29-pound child.

The decision to install it becomes clear when you learn what doctors call the repeated fainting: dying spells.

“He tried to die on us,” says Kris Houston, the Children's Hospital nurse who always works with Dr. Kugler. “You only get to try to die on us once before you get one of these things.”

Death, or at least the absence of normal life, hangs in the background for nearly every patient whom Kugler the cardiologist and Houston the nurse see from the moment they land at the Rapid City airport at 9 a.m., hop into a rental car, drive to Black Hills Pediatrics and start treating patients.

Here comes Ariana, an active, babbling 21-month-old who has Down syndrome and, like many children with the syndrome, was born with holes in her heart. Two weeks ago, doctors stopped her heart to fix a leaking mitral valve.

Here comes Madison, a 16-year-old high school junior wearing pink socks and sporting a stud in her nose. Every time her heart pumps, a tiny pool of blood leaks into her right ventricle. Over time, these drops of blood are pooling, stretching the ventricle like a balloon.

And here comes a father and a mother and their newborn baby. This morning they learned the baby has Down syndrome. This afternoon Dr. Kugler has to tell them their newborn also has a heart defect.

Kugler will sit with the family for a long time after he tells them, and Kris Houston the nurse will stay with them even longer. She has worked for Kugler for 22 years — they have been together longer than any other pediatric cardiologist and nurse at Children's — and she has comforted countless crying parents.

On the way out the father will hug Wanda, the clinic's longtime nurse. And tonight, while Dr. Kugler and Houston eat pasta at an Italian restaurant, this is the case they will think about.

“Sometimes it's just so sad,” Houston says.

The antidote to this sorrow are patients such as the first-grader who, on a recent afternoon, logs on to his grandfather's computer in Pine Ridge, clicks over to YouTube and presses play.

“Con los terroristas!” yells a familiar voice, and then an oh-so-familiar driving beat starts to bump out of the computer's tinny speakers.

James Chief Eagle is watching the Harlem Shake.

This first-grader also illustrates how different a Pine Ridge patient can be from the Omaha toddlers and teenagers Kugler usually sees.

Before James was born — two decades before — his grandfather Patrick Janis says he saw him in a dream. Same eyes. Same nose. Same brave expression.

“And when he was born, I thought 'That is James. There he is,'” says Janis, a traditional Lakota medicine man.

Within hours of his birth, James had been flown to Rapid City and then to Children's Hospital in Omaha. He had been born with a hole in his heart, a leaky ventricle and an aorta that was rotated to the back of his heart.

Three surgeries later, James' 1-year-old heart raged with infection. He spent two months at the Omaha hospital. Every day brought the danger that the infection would overwhelm him and that his heart would cease beating.

When the infection finally cleared and the extended family left Omaha and returned to Pine Ridge, Patrick Janis climbed a hill near his house, four miles southwest of Pine Ridge.

He fasted and prayed for four days and four nights. When he came down from the hill, Janis could not shake the vision of his baby grandson staring up at him from a hospital bed. He could not shake the look that his grandson had given him.

The look said: It's OK.

“His eyes said 'This is what I came for,'” his grandfather says.

James is 7 now, and he is sitting on his grandfather's lap as grandpa talks about his heart surgeries, his narrow escapes.

James does not appear to be listening. He clicks on a video. “Con los terroristas!” Another Harlem Shake.

Janis says it is hard to know what saved James Chief Eagle. It is modern medicine, sure, but the doctors also must admit that they can't fully explain why James lived.

There is one other reason, the family thinks. The surgeon at Children's Hospital named Dr. James Hammel. The surgeon who now has a traditional Lakota quilt hanging in his office — a gift from the grateful Lakota family.

The surgeon's hands glow, the family says.

“A lot of doctors are pushed into it by their mothers,” Patrick Janis says. “Dr. Hammel, I could tell he was a healer.”

Today, Dr. Kugler and Kris Houston are back at the Rapid City clinic, trying their best to heal Judson Two Crow.

The immediate problem: Judson's liver isn't working properly. Kugler confers with Kris, searches for paperwork from a hospital in Sioux Falls and finally decides to order his own test of the boy's liver enzymes.

He tells Jeren and Juanita Two Crow that he will have a liver specialist look at the results when he returns to Omaha.

“We'll figure it out,” he says.

They discuss adjusting the boy's medication as he gains weight, and they adjust the sensitivity of his defibrillator so it won't mistakenly think his heart has stopped and shock him.

A mistaken shock feels roughly like a horse kicking you in the chest, doctors say.

Last year, during a single day, Judson got mistakenly shocked 21 times.

Then Dr. Kugler returns to Grandma Juanita's question. He returns to the question particularly important to the life of a 2-year-old who lives on the Pine Ridge Indian Reservation and happens to be the descendant of a great Lakota chief.

Can Red Cloud's great-great-great-great-great-grandson dance?

Competitive sports are out, Dr. Kugler says. No baseball for the boy in the baseball T-shirt, and no football, either, even though Judson's daddy was an All-State linebacker.

As Judson grows older, the doctor encourages, get him interested in no-contact sports. Maybe golf. Maybe bowling. Maybe archery.

And as for the dancing ... Dr. Kugler looks at Grandma Juanita. He does not know — he cannot possibly know — that the traditional Lakotas consider dancing something else. They consider it medicine.

He does know this: Grandma Juanita is staring him dead in the eye now.

“We really want him to be as normal as he can be,” Kugler says. “So yes to dancing. Go for it.”

What the Two Crow family does not know as they leave Black Hills Pediatrics and head for home is that Dr. John Kugler will soon board a six-seat Cessna bound for Omaha. As he flies over the Badlands, Kugler will think about all the ways that Children's Hospital can delay little Judson's heart transplant.

They need to delay, Dr. Kugler says, because Judson's ultimate prognosis gets better with every passing year.

The Two Crows do know that they trust the Omaha doctors with the boy's sputtering heart.

“I mean, they saved my son's life,” says Jeren Two Crow. “They are my heroes.”

What John Kugler does not know as he boards that six-seat Cessna bound for Nebraska is that, because of his answer, Judson will soon be practicing something the Lakotas call the Grass Dance.

A Lakota legend holds that a young boy, not that much older than Judson, could not dance because he could not use his legs. A medicine man told him to go to the prairie and find the answer to his problem in the swaying grasses.

The boy had a vision of himself, cured and dancing like the swaying grass. Soon he could dance. Soon he was healed.

“Dancing,” the Omaha doctor says as he flies toward home. “I never would've thought to tell them that, yes, that's OK.”

“Dancing,” he says again, shaking his head. “I loved that question.”

Contact the writer: matthew.hansen@owh.com, 402-444-1064,twitter.com/redcloud_scribe

Penury and privation

The Pine Ridge reservation has known much misery since the Lakotas were forced onto the land in the 19th century. Traditional Lakota ceremonies such as the Sun Dance have endured through 150 years marred by broken treaties, poverty and alcohol abuse.

POVERTY: Western South Dakota's Shannon County, all of which is part of the Pine Ridge Indian Reservation, is the third-poorest county in the United States. Forty-seven percent of the county's residents live below the poverty line, according to 2010 data. The poorest and second-poorest U.S. counties are home to Native American reservations in South Dakota. By contrast, roughly 15 percent of Americans live below the poverty line, which is $15,510 for a married couple and $23,550 for a family of four.

BROKEN PROMISES: The second Treaty of Fort Laramie, in 1868, had guaranteed the Lakotas possession of the Black Hills, their most sacred spiritual spot. The U.S. government seized the land less than a decade later, after gold was found there. (The first Treaty of Fort Laramie had promised the Lakotas large swaths of what are now five U.S. states, including Nebraska.)

In 1980 the U.S. Supreme Court ruled that the Black Hills had been wrongly taken from the Lakotas and ordered that the tribe be paid $106 million. The Lakotas turned down the money. They wanted the land.

ALCOHOL: Between half and two-thirds of adults on the Pine Ridge reservation are alcoholics, according to several studies and reports in recent years. One in four babies on the reservation is born with fetal-alcohol disorder. Liquor stores in Whiteclay, the nearest Nebraska town — a village of 12 people — sell 13,000 cans of beer and malt liquor every day, the vast majority to Lakotas living on the Pine Ridge reservation, where alcohol is banned.

CEREMONY: The Sun Dance, the most sacred Lakota religious ceremony, is held each summer. For four days and four nights the dancers refuse all food and water as they dance around a tree. The Sun Dance usually ends after the dancers pierce their skin with sharp sticks and tear the sticks from their chests. The sacrifice — thirst, hunger and flesh — is meant to ensure the Lakota prayers are heard.

Sources: U.S. Census Bureau, U.S. Department of Health and Human Services, National Geographic, Nebraska Liquor Control Commission, PBS, the Associated Press

Contact the writer: Matthew Hansen

matthew.hansen@owh.com    |   402-444-1064    |  

Matthew Hansen is a metro columnist who writes roughly three columns a week focusing on all things Omaha.

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