June 22, 2013 -- Teresa Bartlinski, 6, has fancied herself a princess since she was adopted in July 2010 from China, where she'd been abandoned with a congenital heart condition that rendered the left side of her heart useless.
So when she went to Children's Hospital of Philadelphia for her long-awaited heart transplant last Monday, the blue hospital gown just wouldn't do.
"So they gave her an exception and let her wear her princess gown into the OR, along with a tiara," Teresa's mother, Ann Bartlinski, of Catonsville, Md., told ABCNews.com. "She had a tiara for the surgeon, so as she was wheeling in, she gave the princess tiara to the surgeon and [the surgeon] put it on."
But things took a surprising turn the next day when Teresa went into cardiac arrest, and doctors spent 30 minutes doing CPR to revive her. She's now on life support so the heart can rest and, it's hoped, work as it should. When doctors lessen Teresa's sedation, she squeezes her mother's fingers.
Teresa was born with hypoplastic left heart syndrome, meaning the part of her heart that pumps oxygen-rich blood to the rest of her body didn't work. Babies born with this condition in the United States typically undergo three operations to work around the problem and allow the heart to do what it needs to do despite its problems, said Dr. Ralph Mosca, a congenital heart surgeon at NYU Langone Hospital.
Sometimes, however, the workaround doesn't work, and patients need a transplant, said Dr. Brett Mettler, a cardiac surgeon and professor at Vanderbilt University Medical Center in Tennessee who has not treated Teresa. He said the percentage of patients who need this is unclear, but estimated it at about 10 to 15 percent.
In Teresa's case, she never even had the surgeries. Instead, she had one surgery in china to put a band around her pulmonary artery.
"She has defied all medical odds to survive this long without any intervention," Bartlinski said.
When the Bartlinskis adopted Teresa – their fifth adopted child from China with special needs – they knew she was very sick and needed a heart transplant. Then they were told she needed a lung transplant, too, because the heart condition had damaged her lungs.
They took Teresa to five hospitals, and all of them said she most likely wouldn't survive a heart-lung transplant.
"Every time they told us it wouldn't happen, we told them, God didn't lead us halfway around the world to adopt Teresa from China to bring her home and not have any hope," Bartlinski said. "We knew she was critically ill and did not want her to die alone in an orphanage," said Bartlinski, who also has four biological children. "She needed a family to provide love for however long God would allow. At the same time, we never gave up hope."
It's been almost three years since Teresa was brought from China, and she survived with the help of her doctors at Children's Hospital of Philadelphia. Even though other doctors told the Bartlinskis to take Teresa home to die, the Children's Hospital doctors gave her a drug that strengthened her lungs over time, making a lung transplant unnecessary. It was enough to eventually get her on the heart transplant waiting list.
After nearly a year of waiting, the family was vacationing in Delaware when they got the call to get to Philadelphia for the transplant.
Since patients with hypoplastic left heart syndrome have had surgeries to work around the bad part of the heart, doctors have to undo the workaround to connect the new heart properly, making the transplant operation especially complicated, Mettler said. It's not clear how the single surgery in China complicated Teresa's transplant.
After Teresa went into cardiac arrest, doctors put her on a machine to do the work of her heart and lungs, and sedated her. The rest of her family traveled to Philadelphia to be near its princess.
After Teresa spent three days on life support, her doctors learned on Thursday, June 20, that Teresa will need another surgery to repair her new left atrium – which funnels oxygen-rich blood to the pumping chamber to go to the rest of the body, Bartlinski blogged. "Teresa's broken heart vessels were smaller than the donors'," Bartlinski wrote, adding that Teresa's doctor was confident Teresa's heart function would improve after this second surgery. The Bartlinskis have been praying hard – specifically to Pope John Paul II, who died in 2005. If Teresa is cured, they hope to attribute the "miracle" to him, making him eligible for sainthood, which requires three miracles, Bartlinski said.