A piece of clear packing tape secures a blue card to the back of a chair in the Bartlinski family dining room. The label bears a name that stays on everyone's mind: Teresa.
At the moment, the seat is filled by 10-year-old Emilia. She's embellishing a pink paper heart with blue marker, and gives it a glittery crown. The heart is one of dozens she and her sisters have made, hoping the artwork will one day adorn the walls of a home for orphans in China — a place abandoned children could go to receive life-saving medical attention and, maybe one day, get adopted.
Had Teresa had a place like that to go to, she might have lived. She was a very sick 3-year-old when Ed and Ann Bartlinski of Catonsville adopted her in 2010. They brought her to world-renowned surgeons, nursed her from a tiny 20 pounds, and fought for her to get a heart transplant. They lost her last year when she didn't survive the procedure.
In her dying, her parents say, they've come to more fully understand Teresa's lessons.
They've been witness to Catholics who have united in prayer, inspired by the 6-year-old's life. They've watched Teresa's American doctors join their mission, training medical professionals from China in life-saving interventions. And they've felt the pull of their daughter's guiding hand as they work to create the Love You More Heart Home in Beijing, the city where they first met her. They're calling it a "heart home" because they hope the children treated for cardiac problems will also discover they are loved.
Her mother says that like Therese of Lisieux, the French saint for whom the child was named, Teresa's purpose couldn't be fulfilled during her life alone.
"My mission — to make God loved — will begin after my death," St. Therese famously wrote in her autobiography before her death in 1897, at age 24. "I will spend my heaven doing good on earth. I will let fall a shower of roses."
The Bartlinskis had hoped to open the center in time for the anniversary of Teresa's death July 1. They now realize it may take years to raise the necessary money — their goal is $1 million.
In the meantime, they've set up a nonprofit, forged partnerships with two charities that arrange care for medically fragile orphans, and begun to raise money. Some warn, however, that the family may encounter challenges navigating the policies of a foreign government and health system at a time when China is undergoing major policy changes.
Like some other families that have lost a child, the Bartlinskis are trying to find a greater purpose in the tragedy.
The family of Yeardley Love created the One Love Foundation to end relationship violence after the 22-year-old University of Virginia lacrosse player and Cockeysville native was killed by her boyfriend in 2010. The families of Elizabeth Nass and Rose Mayr, who were killed two years ago in an Ellicott City train derailment, are planning the second annual "2 Miles for 2 Hearts" memorial run Aug. 16 to raise money for scholarships.
Ann Bartlinski, a deeply religious woman, believes Teresa, in heaven, is steering her family's actions.
"I know how to take care of kids. But I have no idea how to start a heart home," she says on a recent day inside her dining room, where four of her daughters, each adopted from China, have markers, glue sticks and shiny trimmings scattered on the table. "And when Teresa died, we knew this is what we were going to do in her honor, to help more orphans. … We wanted to do something to help other orphans have a chance at life that she didn't have."
Twelve-year-old Mary writes on a pale pink heart in her neatest penmanship, "God will not leave you as orphans — John 14:18." The child, with long silky black hair and braces, was found on the side of the road near the Chinese city of Wuhan, born with a cleft palate, and starving.
Teresa was born with a condition called hypoplastic left heart syndrome that stopped her heart from fully developing, and prevented her organs from receiving sufficient oxygen.
She died at the Children's Hospital of Philadelphia after doctors attempted to give her an artificial heart in place of a donor's heart that her body rejected. Her medical team could not attach the man-made Berlin Heart because tubes from the device, needed to circulate blood, didn't fit her small, damaged lungs.
The family had enlisted their church, St. Mark in Catonsville, and those following Teresa's story worldwide — primarily through the family's blog, "Our Place Called Home" — to pray for the healing of Teresa's hearts and lungs.
Though the miracle they sought didn't come to pass, the Bartlinskis and the Archdiocese of Baltimore say they've heard from many Catholics so moved by Teresa's love and faith that they've been inspired to strengthen their beliefs in God and the church.
The name for the center comes from Teresa's standard sentiment: "I love you more."
With the help of their partners, the Bartlinskis have raised $30,000 and created a business plan. They also have established a nonprofit, Believe in Miracles. The money has come from people who have sent contributions in Teresa's memory as well as donations made by children at the schools their daughters attend. Funds also have come from the family's nonprofit partners.
Bartlinski says the home will cost $700,000 a month to run. While that's a daunting number, she says, most of the expenses will be assumed by one of the family's partner charities based in Beijing and the Chinese cardiologist who founded it. The doctor asked The Baltimore Sun to withhold his and the organization's name, fearing a potentially negative reaction by the Chinese government.
The organization will provide staffing and oversee the daily operations, its officials in China confirmed. The Bartlinskis say they expect to return to China several times a year to monitor the home and coordinate mission trips from U.S. medical teams.
Heart disease is an ailment frequently seen in Chinese orphans, and one often requiring expensive and complicated surgeries. Sometimes, experts say, impoverished families — virtually always from the rural countryside where they have little or no access to prenatal care or ultrasounds — will abandon their children after birth when such a disease is diagnosed.
Initial plans call for the Love You More Heart Home to provide pre- and post-operative care for up to 20 orphans, and as many as four children still living with their poor families. Each child will be assigned a medical liaison and be under the constant care of a specially trained nanny.
The center also will have a small office to serve as the base for Little Hearts Medical, another charity involved in the project. A family from outside Portland, Ore., established the nonprofit, which arranges heart treatment for orphans.
Bartlinski says commitments for furniture and equipment for the center have already been secured from Chinese donors.
The family also connected Teresa's medical team in Philadelphia with a cardiologist, physician's assistant and cardiac nurse from China. In February, the Chinese professionals shadowed Teresa's doctors on surgeries and for medical rounds, and the group traveled together to Florida for a cardiac seminar to learn more.
The Bartlinskis went to China in September to meet with charities, government officials, doctors, orphanage operators and activists.
"The government is willing to help with the paperwork to get the children adopted as soon as we get them stable," Ann Bartlinski says. "It was not something we could have ever done alone. It's all God. He just put everything right in front of us.
"When she didn't live, we knew there had to be a meaning," she adds. "Would we have started a heart home if she had lived? Probably not."
Mike Lee, who founded Little Hearts Medical with his wife, Tanya, says there are few places where Chinese orphans can receive treatment for heart disease, and the Lees were looking for ways to build on the work they're already doing.
Their charity connects Chinese cardiac teams with U.S. medical professionals, who travel to China to train their counterparts and then work alongside them on surgical and medical intervention. In the year and a half since its founding, Little Hearts has helped to arrange complex heart procedures for about 50 children, including five who've had open-heart surgery. It has also helped as many as 30 children find permanent families.
Without such help, "it can be a very bleak picture" for the children, Lee says.
The Lees came to know the Bartlinskis because their daughter, Lillian Cai Ping, was in a foster home with Teresa in China. The Lees have six children, including four who were adopted from China.
"We're all taking it on together," Lee says.
One challenge for the families will be navigating the process as health care in China is in transition, according to Lee. The goal is to serve the children in a way that fits with the changing Chinese system.
"The people in China are looking for help to do this," Lee says. "They sacrifice tremendously to do what they can do now. It's difficult to see children who die who wouldn't die" if they were in the United States.
Nathaniel Ahrens, director of China affairs at the University of Maryland, College Park, says the Bartlinskis are taking on their project at a difficult time.
The nation is in the midst of broad policy changes as the government shifts to rely more on social organizations for the care of orphans and the elderly, and to address other social ills, Ahrens says. With the change has come heightened scrutiny of non-government organizations, especially those based abroad.
"At the highest levels of government, they are worried about the role foreign NGOs play in anti-government actions," Ahrens says. "There has been a quiet but nationwide effort to catalog foreign NGOs."
Securing Chinese partnerships, as the Bartlinskis have, is key, he says.
"You need an organization in China that's willing to stand up and say, 'I am willing to put my name, my job on the line' and say, 'I am willing to work with this organization,'" Ahrens says.
Lijing "Lily" Lu is one of those people.
She is medical director for one of the charities that is partnering with the Bartlinskis. She knew Teresa when her name was "Fang Fang," when the child lived in an orphanage in Beijing where Lijing used to work.
By the time Teresa came to the orphanage, it was too late for her to have surgery to fix her heart defect. The little girl had been abandoned in a village in the Shanxi province.
"We had her when she was already more than 6 months old, and no surgeon can help her in China," Lijing wrote in an email. "She had been fighting and fighting 'til she was adopted. I still remembered how tough she was.
"Whenever I think of this, there are tears in my eyes. She was trying so hard to live in the world and smiled so much."
In the Bartlinski dining room, their four surviving adopted daughters are at the table, working on their paper hearts. Each has suffered from medical problems that could have been treated in China, had the help been available.
Emilia (named for the mother of Pope John Paul II) was found amid rats in a well near Wuhan with burn marks on her face and stomach. The child has lived with her new family in Catonsville for about six years.
She moves over to the kitchen counter, closer to her mother, and stands on a stool so she can reach it. The standing in itself is remarkable for a child afflicted with a bone infection called osteomyelitis that nearly destroyed her legs.
Doctors at Sinai Hospital rebuilt them, giving her the ability to stand and to walk. The infection would have been treatable with an antibiotic.
Asked if she'd like to offer any memories of her sister Teresa, she shrugs and keeps her eyes on her project.
Bartlinski says the children are still grieving. The girls see a therapist regularly, and at dinner they talk about Teresa, retelling the stories they all love, like the times she held her spoon up to her face and used it as a mirror to freshen her lipstick.
Someone always sits in the seat with the blue name tag Teresa brought home from school so many months ago.
"It's been a hard year," the mother says. "But we know Teresa is still with us."
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