Jayson Jacoby
The Baker City Herald

By Markian Hawryluk

WesCom News Service

NORTH POWDER -- Not even her puffy cheeks could hide Lindsey Bingham's smile.

As soon as her family's red Suburban pulled to a stop, the 9-year-old leapt from its doors and into the arms of some 120 family and friends gathered in front of the North Powder School to welcome her back.

Most of all, she wanted to see her two cousins, girls about her age. She found them quickly, and soon the guest of honor disappeared to do the things normal 9-year-old girls do. At least for an hour or two, there were no tests or needles or medical equipment to worry about. After more than a year away, including 264 days in the hospital, Lindsey was home.

The family of Jason and Stacy Bingham, of North Powder, has made national news after three of five children were diagnosed with dilated cardiomyopathy, a life-threatening enlargement of the heart. The oldest, Sierra, 13, had a heart transplant seven years ago. Lindsey had hers this year, on Valentine's Day. Gage, 4, has a pacemaker, but medications appear to be keeping his condition in check. Megan, 11, and Hunter, 6, show signs they might have the same condition, but they are well for now.

So while the health concerns are still daunting, back in their hometown the Binghams can now try to re-establish a sense of normalcy.

"The first thing I really enjoyed is, when we got out of the Suburban, five kids went in five different directions," their father, Jason, said. "I didn't even see them again until we were packing up to go."

Three and a half months after her transplant, doctors say Lindsey is doing remarkably well, attributing that, in part, to the Berlin Heart, an artificial heart pump that kept her alive and active as she waited for a donor heart.

"One of the things we have found, the reason why these devices are so helpful, is that patients are in much better shape when it comes time to transplant," said Dr. Daniel Bernstein, a cardiologist at the Lucile Packard Children's Hospital in Palo Alto, Calif., and one of a team of doctors involved in Lindsey's care.

Before doctors could use such devices, children in need of transplants often languished in intensive care units for months. If the wait for a donor heart dragged on, many didn't survive. And if they did, they often came to the transplant in a fragile state, complicating recovery. Lindsey waited eight long months on the Berlin Heart, but it allowed her to be active and in good shape for her transplant.

"The Berlin really helped her organs stay healthy. She was up and running around and going to school and doing artwork," Bernstein said. "She has actually flown through the post-transplant process."

Although she was able to return home, she'll be no stranger to the hospital. Lindsey will have to return for heart biopsies to watch for any potential rejection of her new heart. She'll have clinic visits and ultrasounds. Like her sister, Sierra, she'll have to take immunosuppressive drugs all her life to keep her immune system from attacking the foreign tissue now beating inside her chest.

"The risk of having a rejection episode is highest in the first couple of months after the transplant and then it goes down, so she's at highest risk between now and another month or two," Bernstein said. "After that period of time, the risk appears to decline. It never really goes away."

It's a lesson the entire family has learned well with Sierra. Seven years after her transplant at age 6, she still gets regular biopsies. Within the past year, she was showing some signs of rejection. Doctors adjusted her medications, and her last biopsy results in May came back as a zero, the lowest possible score.

"When I told the results to Sierra, she jumped up and down, and squealed with delight. You could see the relief written all over her face," Jason wrote on the family blog. "I think she keeps a lot of that bottled up inside, because she doesn't want anyone to worry about her."

Lindsey put it all into perspective. "Jeez, you would have thought she got an offer for a heart," she said.

Aged spirits

Their shared experiences will give the girls a bond that goes well beyond the standard sibling ties. The sisters will undergo biopsies, take many of the same medications, and take many trips back to Palo Alto for treatment and checkups. At home, they share a bedroom.

Sierra can provide Lindsey with both a road map and a guided tour.

So the Binghams knew to expect that Lindsey would swell up from the prednisone, one of the medications she takes to prevent rejection. They know they will likely have to buy Lindsey bigger clothes for the next six months but that she'll slowly return to normal as the dose is decreased over time.

"She'll always have to take immunosuppressive medicines, but the doses are going to be a lot higher now compared to what she's going to be taking six months from now, a year from now, two years from now," Bernstein said. "And the things that we have to do in terms of watching her will decrease over the next couple of months."

Jason says that as the big sister, and the first to have a heart transplant, Sierra feels she must provide an example for Lindsey.

"Lindsey watches Sierra. 'Whatever Sierra can do, I can do,' " Jason said. "It's a very heavy responsibility for a 13-year-old. It's a really big responsibility she carries on her shoulders."

Last month, the family went to the beach in California, only a few days after Sierra received an IV treatment. While the rest of the kids were playing on the dunes, Sierra stayed in the car with "screaming" headaches. But Jason said she didn't complain or let on in front of Lindsey.

Lindsey has told her parents she wants to do her next heart biopsy awake, just like Sierra does, even though she's scared of the procedure. Doctors will snake a catheter through an opening in her neck to her heart and take tiny samples of heart tissue to test for rejection. So far each of Lindsey's biopsies has been under full anesthesia. She wakes up and the procedure is over. If she undergoes the procedure awake, she can be in the same room as Sierra.

Lindsey and Sierra both face decisions and talk of procedures few kids can understand.

"They had to grow up early. They're still immature little kids but in a way they're aged spirits," Stacy said, borrowing a line from a parent she met down in Palo Alto. "They know more than kids their age should have to."

Between visits

Much has changed since Sierra got her new heart. Doctors have more experience with the Berlin Heart, allowing them to wait for a better match for Lindsey's heart. Lindsey also underwent plasmapheresis to clear her blood of antibodies that might increase her risk of rejection. That could help Lindsey avoid the monthly infusions of intravenous immunoglobulin (IVIG) that Sierra now undergoes. They often result in debilitating headaches, particularly if she doesn't drink enough water.

In fact, Lindsey is doing so well that Stacy and Jason spend more time talking about Sierra's various tests during her checkups.

"Sierra's numbers are down, not to normal or where they want her, but down from really high," Stacy said. They know all that could change in a moment.

"We live biopsy to biopsy," she said.

"The next test is a month away," Jason added. "We've been down the road before, 'Oh, all is well. We made it. It's over. The kids are playing.' "

"It's never over," he says.

"Lindsey walks in here in five minutes and her ankles are swollen or Gage's face is swollen," Jason said. "That's the reality. It's happened to us many times.

"The nice thing is we can have a normalcy here in between visits," he said.

The Binghams live next door to Jason's parents on the family ranch, in a valley nestled between two mountain ranges in Eastern Oregon. Two of Jason's brothers and their combined nine kids live nearby. It's the type of place where parents can let their kids ride their bikes freely without worrying about strangers or traffic, a far cry from the streets of Palo Alto.

The Binghams tried as much as they could to create a regular life for their five children over the very irregular past year. They all moved down to California in the summer to be near Lindsey, and for most of their stay, lived in a small room in the Ronald McDonald House adjacent to the hospital.

The table was so small, no more than three of them could have dinner together. Used to having family dinners together every night, they found a larger room in the hospital where they could all eat together. Everyone in the family would take turns telling the family about their day.

Before their first breakfast back home, Stacy noted how far they had come.

"We can sit more than three people at the table," she said. "Let's take this moment to reflect on that."

Then Lindsey said grace.

Mary Burge, a social worker at Packard, has seen many families try to cope with the stress and upheaval of having a child in the hospital for a long stretch of time. She was amazed at how well the Binghams were able to keep their lives from spiraling into crisis mode.

"I always marvelled at their ability to maintain a sense of normal home life in a really abnormal situation," she said. "I think that's one reason everyone has coped so well."

Even in the hospital with Lindsey, Stacy always made sure the kids stayed on top of their homework. She had worksheets for Gage, who isn't in school yet, and Lindsey regularly attended class in the hospital. In a journal that Lindsey kept, she wrote how, when she didn't want to go to school, Stacy would tell her she was taking the Berlin Heart machine there, and since Lindsey was connected to it, she was going to have to go as well.

"I really believe families who maintain education for their kids through a medically traumatic experience, the kids do better, and Lindsey always had the expectation that she was going to measure up to the family standard for behavior, manners, cleanliness, hygiene," Burge said. "The fact that you need to go to school, you need to do your homework, because you're going to be promoted to the next grade, which means you will be alive, it's a subtle message."

School also gave the Binghams some structure to their lives and filled up what could have been empty days.

"School was such a saving grace, because it forced us to step back. Lindsey had to be by herself sometimes and that was OK. Otherwise the other kids wouldn't have had a life," Stacy said. "That put us into a routine. Time started flying when they became active in school and sports."

Saturdays, in contrast, were absolute torture. With no school and not enough weekend staff to take Lindsey and her Berlin Heart machinery around the hospital, they were stuck, five kids and two adults in a tiny hospital room.

"Like hamsters on a treadmill," Stacy said.

They celebrated a full year of birthdays and holidays at the hospital, trying to keep their family traditions intact. Stacy made her traditional spudnut doughnuts on Thanksgiving and orange rolls on Christmas. Instead of the holiday sledding trip, they broke open a piandntilde;ata and had a snowball fight with marshmallows. A friend made them snowballs out of quilt batting, which Lindsey threw at the doctors in another mock fight.

Megan and Sierra played sports at school and played in the school orchestra. They had to get up early to practice their instruments - Megan the clarinet, Sierra the alto sax - in a room at the Ronald McDonald House each morning. Life had to continue.

Sierra and Lindsey are already due back in Palo Alto for a checkup June 12. That happens to be Jason and Stacy's anniversary. They didn't get to celebrate last year's either.

Great cost

Lindsey's grand adventure, as she called it in her journal, has come at a great financial cost. The family has a high-deductible health insurance plan, so the first $13,000 of their costs aren't covered. Still, that's a drop in the bucket compared with the total bills. While Lindsey was on the Berlin Heart, Jason saw charges of $250,000 each month. The insurance paid a negotiated rate with the hospital, about half of that amount. The monthly bills for July for the Berlin Heart surgery, and February for the transplant, topped seven figures. The year in Palo Alto may have cost more than $3 million.

They continue to pay $1,000 per month in prescription medication costs, receiving some help from the pharmaceutical companies that make the drugs. Lindsey takes 14 drugs each day, Sierra 12 and Gage four.

Their good fortune is a common theme from Jason and Stacy. While many might look upon their plight and feel pity, the Binghams know they're incredibly fortunate to have two kids with successful heart transplants.

"Yeah, we've got to figure out how to deal with headaches, how to get our kids to California every month. But we had options. The IVIG is an option, the Berlin was an option, the heart transplants was an option," Jason said. "A generation ago, we'd be a two-kid family right now."

Their last week at the hospital underscored their good fortune. Other families experienced the same trials and challenges the Binghams now have faced three times, with Sierra, Lindsey and Gage.

A girl, Chloe, who was on the Berlin Heart at the same time as Lindsey, was back in the hospital with a high fever and vomiting. Rogilio, the boy who took over Lindsey's hospital room when she left, finally got his heart. But a young boy named Caleb, who went to school with Lindsey and had an incurable condition, passed away. In the middle of playing a game with his nurses, the 6-year-old simply laid back in his bed and died.

And the Binghams know that Lindsey is alive today only because another child didn't make it, and a family somewhere gave a gift of life in their darkest hour.

They can't help but think about why they have been so fortunate.

"All the time," Stacy said. "You meet a family there and you hear their story. All of a sudden you button your lip. What are we complaining about? We're good."

Even as Jason was packing up the Suburban on his final day in California, he spotted a man whose eyes told a story of heartbreak. The doctor had just told him they had run out of options, that they should go home to spend their last few days with their dying son.

"Everyone wants to hear the happy story, so they can go back to their own life. It's human nature." Jason said. "I don't know how you cope with something like that. We've never had to cross that road."