At 2, he's oblivious to the role he played in a fledgling collaboration between cardiac specialists in Oregon and China, one with potential to save thousands of children like him.
Jian Jun, born with single-ventricle congenital heart disease, is too young to know how perilously close to death he was when Mike and Tanya Lee adopted him from China last April.
One day, though, he'll undoubtedly hear about the surgeon in China who wanted to help but didn't know the techniques U.S. specialists use to fix such fragile hearts. He'll learn of the rush to approve his adoption, so his heart could be mended at Doernbecher Children's Hospital in Portland, where such repairs are common. And he'll absorb details of Little Hearts Medical, the new organization that aims to fill that gap, enabling highly specialized training across medical cultures that, in some ways, are worlds apart.
The story with the lovable little boy at its core illustrates a potentially dramatic shift in how information is shared and complex cardiac care is delivered to the neediest children in the world's most populous country and perhaps beyond.
First, though, meet the catalysts behind that shift, Jian Jun's family.
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His parents, Mike and Tanya, both 38, didn't expect the path they started down together as Walla Walla University students would lead them to have two sons before adopting four children from China, three with intensive medical needs."I wasn't even planning on having any kids," says Tanya, a registered nurse.
The couple dated four years, marrying the week after finishing college in 1997.
Miserably sick through her pregnancies with Jake, 11, and Nick, 9, Tanya wasn't willing to endure it again.
What, she asked her husband, did he think of adoption?
Mike, who operates his Silver Key Headhunters recruiting company from a home office, was game.
In December 2005, they traveled to China and brought home 10-month-old Anna Li Xue, a healthy, smart, athletic girl who altered the family dynamic in her own vociferous way. In a blog post, Mike wrote: "When Anna was happy the place lit up. But when Anna was mad, watch out!"
Though they weren't looking to adopt again, Tanya monitored the Children's Hope International adoption agency's list of Chinese orphans awaiting families. A photo of a delicate 8-year-old in a yellow dress caught Tanya's eye in August 2006.
An estimated 1 percent of children worldwide are born with heart disease. It's among the conditions resulting in some children being abandoned or surrendered for adoption in China and around the world. And it's among the conditions that render children less likely to be adopted.
Even Tanya, who'd trained at Doernbecher and nursed critical-care patients at OHSU Hospital, figured she and Mike wouldn't adopt a special-needs child, thinking it would be too tough on their other children.
Min Tian, the girl in the yellow dress, had single-ventricle congenital heart disease. Her heart didn't have the normal four chambers. It pumped blood through her body, but not nearly enough through her lungs to provide sufficient oxygen.
In the United States, using procedures that have swiftly evolved since the 1950s, doctors typically repair the condition when patients are infants or young children. Multiple surgeries or cardiac catheterizations often are required.
In China, a country of more than 1.3 billion, including more than 700,000 orphans, patient loads are so staggering that the ability to treat such complex conditions is limited.
"Technically, cardiac surgeons in China are phenomenal and can do just about everything that is done in America," says Dr. David Rutstein, a former deputy U.S. surgeon general now working in China. But public hospitals are so overcrowded, he says, that "the likelihood the charity case will get the surgery they need is very low."
Rutstein is vice president for medical affairs of United Family Healthcare, a U.S. company operating the only internationally accredited health care system in China.
Min Tian had one stroke of luck. A doctor from the nonprofit Love Without Boundaries had performed a catheterization on her, yielding video images of some of her 12 heart defects.
The Lees called cardiologists at a handful of U.S. medical centers, asking whether they'd review the images and offer advice. Doernbecher doctors came through, saying that if the child's heart defects weren't repaired, she wouldn't live past about 14.
The couple set aside the notion of adopting only a healthy child.
"It was one of those things," Mike says. "You know that you should do something."
Authorities helped them expedite the adoption. In February 2007, six months after the couple first saw Min Tian's photo, Tanya brought her home.
They call her Shelby. She's friendly, artistic and so bright she learned English in six months.
Since arriving, she's had eight catheterizations and three surgeries to separate her heart into two parts and create more normal circulation. Doernbecher doctors also installed a pacemaker. One day, she may require a heart transplant.
***
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Again, a photo piqued the Lees' curiosity.
It arrived in an email from a nonprofit that trains caregivers in Chinese orphanages. Half the Sky Foundation told its supporters, including the Lees, about three little girls, all of whom needed surgery and adoptive families.
They brought one of those girls, Lillian Cai Ping, now 5, home in May 2010. She, too, had single-ventricle congenital heart disease.
Though her problems were even more complicated than Shelby's, doctors determined she was a candidate, unlike her adoptive sister, for full four-chamber heart repair. Such a fix typically results in the best long-term outcome.
Surgery that September lasted 17 hours. Dr. Stephen Langley, Doernbecher's chief of pediatric cardiothoracic surgery, told the Lees their newest daughter bled profusely and lost blood pressure for as long as 45 minutes. The doctor, Mike remembers, told them to prepare for the worst. She might not survive the night.
Ping, as she prefers to be called, stirred about six hours later.
Slowly, she recovered.
In March 2011, though, her parents rushed her to the hospital with a life-threatening heart infection. One night in the intensive-care unit during Ping's three-week stay at Doernbecher, Mike checked his email. One was a query from a social worker at Associated Services for International Adoption, a Portland-based agency. A boy from Inner Mongolia had heart problems similar to Shelby's and Ping's. Could the Lees help with information on surgeries that might be required?
The email didn't include the child's picture. Mike didn't know the boy's name.
Yet, Tanya sensed what he was considering.
"I said, 'No,'" she recalls. "I felt really stretched."
Mike couldn't stop thinking about the child.
A few months later, the social worker emailed him again: Did the Lees know of anyone who might adopt the boy with the bad heart? He was 1. His health was slipping.
As Mike's had, Tanya's heart softened.
"I'm going to go pick up this child," she remembers thinking. "We're going to do everything we can. I'm not responsible for the outcome. God's responsible."
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As their adoption paperwork moved through the system, the Lees learned the boy's health had so deteriorated that doctors wouldn't allow him to travel, not in China, as the adoption process required, and not to the States. Aiming to intervene, Tanya moved up her plane reservations.
She met Jian Jun at Little Flower Foster Home in Beijing. It houses as many as 80 children who are so seriously ill, Tanya says, that all would be in intensive care if they were in the States. Little Flower has no doctor. Staff members aren't medically trained. Yet, they try to give the children the best lives they can.
Jian Jun's skin was gray, and his lips and tongue were black, the result of his heart failing to supply enough blood to his lungs, shorting his system of oxygen. Though he was 18 months old, he didn't eat solid food. He scarcely moved or made noise.
The Lees consulted Dr. Laurie Armsby, a pediatric interventional cardiologist at Doernbecher who treats Shelby and Ping. "She couldn't guarantee she could help," Mike says, "but said if he stayed there, he'd die."
Little Flower's care manager suggested that Tanya meet with Dr. Zhou GengXu, a respected cardiac surgeon at a Beijing children's hospital. He'd already seen Jian Jun and didn't believe he could help. He'd also treated Ping before her adoption, but didn't think she was a good candidate for heart surgery.
Tanya showed the doctor photos of Ping, post-surgery.
"He teared up," she says.
Tanya says Zhou told her that surgeons in China didn't do the four-chamber heart repair that saved Ping. He wanted to observe one. He wanted to learn.
He OK'd Jian Jun for travel and asked to meet the U.S. doctors who fixed Ping's heart.
Tanya plotted to introduce Zhou to Armsby and Langley.
***
Langley operated on Jian Jun two weeks after the boy arrived in Portland last spring.
"It's remarkable he even made it," Mike says. "His time was running out."
As he recovered in the hospital, an idea Tanya first had in China blossomed. Initially, she thought she and Diana Scolaro-Cook, a Doernbecher intensive-care nurse, could spend a week at Beijing's Little Flower Foster Home teaching employees the basics of pediatric cardiac care. But given the Chinese surgeon's desire to learn from Doernbecher's experts, Armsby signed on, as did a handful of others.
Together, the team launched Little Hearts Medical. Until it acquires tax-exempt status, the nonprofit operates through Hockinson Community Church near the Lees' southwest Washington home.
What: A new, Northwest-based nonprofit aiming to foster collaboration between world experts in congenital heart disease and the medical establishment in China to better serve fragile children. ?
Donations: Tax-deductible checks are being accepted on behalf of Little Hearts Medical by Hockinson Community Church, 15918 N.E. 182nd Ave., Brush Prairie, Wash. 98606.A fundraiser brought in something shy of $20,000 for travel expenses.In China, doctors rapidly organized a medical conference so Armsby could speak on single-ventricle congenital heart disease and treatment in the States.
In October, the Little Hearts team flew to Beijing. Langley followed in November. They met with surgeons, government officials, orphanage operators and others, including Rutstein of United Family Healthcare, whose company directs 1 percent of its revenue to treating orphans.
This month, the Lees returned to China with Armsby and Langley to develop a framework for their ambitions: from training cardiologists, surgeons and nurses to teaching the basics of cardiac care to medical-foster-home workers.
The U.S. experts expect their Chinese counterparts will teach them plenty, too.
"Our goal with Little Hearts," Armsby says, "is to invite world experts in congenital heart disease to join our teams and ... not to perform lots of procedures and leave, but to work in collaboration with the Chinese system -- to work with them to strengthen the services they provide."
Their timing might be perfect. Little Hearts arrives in China just as sweeping health reforms do, and the Chinese look to the West for ideas on how to provide the best care to the most people.
"I think," says Rutstein, "that they could be a consistent and effective force for change, particularly in dealing with this vulnerable population."
***
In the after-school hours of a rainy winter day, the Lees' home in rural Clark County swirls with activity.
Jake and Nick play a game on an iPad. Anna, 8, angles to beat her father at "Go Fish." Tanya makes Chinese tea and prepares medicines for Ping, who pulls around a pole carrying intravenous nutrition solution she takes through a feeding tube. Shelby, 14, minds little Jian Jun, who stumbles across the kitchen and plops atop Mack, an amiable chocolate Labrador and the latest recipient of the boy's hugs.
They fill their hours with books, music and crafts. They tend horses, chickens, cats, dogs, a donkey and Stella the cockatiel, who sometimes flaps around the living room.
Neither Tanya nor Mike knows how long any of their children has -- not those born healthy or those challenged from the start with defective hearts. No parent does. So they stick close to home and cherish their days.
"Life is interesting," he says.
"It's not boring," she says.
The Lees don't plan to adopt again, or, as Tanya puts it, "We don't want an orphanage here. We want a family."
They hope Little Hearts Medical satisfies their recurring urge to get help for some of the world's neediest children.
"You just take opportunities," Mike says, "when they come."
- Katy Muldoon; twitter.com/katymuldoon
Source: http://www.oregonlive.com/health/index.ssf/2013/02/adopted_children_inspire_colla.html
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