By Bill Barrow, The Times-Picayune
Tyler Green insists that she is plain old “normal,” just like any other student at John Ory Elementary School in LaPlace.
View full size Michael DeMocker, The Times-Picayune Ochsner pediatric heart transplant patient Tyler Green, with her mother, Keysla, by her side, is honored on the court prior to the game between the New Orleans Hornets and New Jersey Nets at the New Orleans Arena on Wednesday.
Rapidly approaching 6 feet tall, the energetic 11-year-old already stands out. Yet it is the scar concealed by her clothes that marks her extraordinary past year, a turn that has made her life anything but normal.
Tyler Green has a new heart, and according to Ochsner cardiologist Dr. Thomas Young, “She’s done phenomenally” in the eight months since her transplant. “If we had to present a poster child for transplants, she’d be the one.”
She is the first — and, to date, the only — child to receive a heart transplant in Louisiana since 2006, when post-Katrina personnel losses forced Ochsner Health System to suspend its heart transplant program for children. Now, with the transplant team replenished, the hospital points to Tyler Green not just as a case of an impressive individual recovery but also as a sign of the battered region’s ongoing rebuilding process.
Keysla Green, Tyler’s mother, concurs, calling it “a blessing” to have a pediatric heart transplant team — a sub-specialty of the already sparse heart transplant field — less than an hour drive from her St. John the Baptist Parish home. The nearest alternatives are in Birmingham, Ala.; Dallas; and Little Rock, Ark.
During two interviews since the April 22 transplant, Tyler eschewed the attention that comes with her case. Her mother, meanwhile, has embraced Tyler’s return to normality, but nonetheless betrays the depths of emotion that accompany such an ordeal.
View full size Brett Duke, The Times-Picayune archive Tyler Green, 10, plays a board game with volunteer Kati Hinton in May at Ochsner in Jefferson.
Less than a week after the transplant in the spring, the young patient, either painfully shy or painfully bored with a visitor’s questions, showed no signs of her surgery other than the edge of an incision bandage visible above her collar and a mask protecting her from potentially lethal infections. Keysla Green laughed at her daughter’s shrugs and one-word answers, but she, too, found it difficult to give voice to her experience, choking up upon mention of the unidentified donor and that child’s family.
Strict privacy rules guard the identity of organ donors.
“I can’t tell you how much it means that they gave Tyler a new heart,” she said. “I remember how sick she was,” she continued, unable to finish the thought.
The transplant capped a whirlwind several months that began when Dr. Kosi Avotri, a pediatrician based at River Parishes Hospital in LaPlace, detected an irregular heartbeat and referred Tyler to Ochsner cardiologists. The eventual diagnosis was dilated cardiomyopathy, essentially an enlarged heart that is too weak to meet the body’s demands.
Avotri’s discovery came before Tyler began displaying the obvious signs of heart failure: fatigue, shortness of breath, loss of appetite, abdominal pain and discomfort — all symptoms she endured despite a battery of medication that often can extend an ailing heart’s viability.
“She just kept getting worse, and we knew it was time to start looking at a transplant,” Young said. Doctors have never pinpointed the cause of the myopathy, although the condition often is traced to a previous infection that damaged the heart muscle.
Tyler was placed on the national heart transplant waiting list on March 29. By April 21, Ochsner physicians upgraded her to the highest priority status, a designation for patients who are hospitalized and dependent on intravenous drugs, ventilators and other heart-pumping aids. News of a donor heart arrived a day later, and on the evening of April 22, cardiovascular transplant surgeons Dr. Dennis Mello and Dr. Shaun Setty, led the transplant team in harvesting the donor heart and putting it in place of Tyler’s failing organ. By May 8, she returned home.
Worldwide there are between 3,500 and 4,000 heart transplants annually, with about 10 percent of those, on average, occurring in children. But the demand, based on the cases of severe heart defects and disease, is estimated at about 800,000. Ochsner has averaged 18 heart transplants annually since 2005, though that number is expected to increase slightly upon the return of the pediatric team.
In the United States, the average recipient must spend about five months on the waiting list before a transplant, and about a quarter of those on the list die before receiving a new heart. The wait can be even longer for children, who have further restricted donor possibilities because of their size. Young noted that Tyler Green, because of her height, did not face such obstacles, though he said she still received another child’s heart.
Survival rates for heart transplant patients have improved substantially in the past two decades. As of 2009, the one-year survival rate was almost 90 percent for males and almost 77 percent for females. Those numbers are 79 percent and 77 percent at three years, and 73 percent and 67 percent at five years.
Tyler Green appears already to have cleared the most immediate threats for transplant recipients: immediate rejection and infection brought on by a drug-suppressed immune system. Organ recipients must take immunosuppressants as long as they live to prevent their bodies’ immune systems from attacking the transplanted organs as foreign cells.
Longer-term complications include an increased risk of cancer, associated with the permanently weakened immune system. Heart transplant patients also are at greater risk of arteriosclerosis and coronary artery disease that can lead to stroke, heart attacks or sudden cardiac death.
Tyler’s recovery includes regular visits for echocardiograms, electrocardiographs and other tests that include biopsies of the heart muscle to test for rejection. Those visits eventually will be spaced out annually, but must continue throughout her life.
Young said a strong, healthy patient like Tyler can expect to lead a relatively normal life. He noted that transplant recipients have established their own Olympics. Heart transplant patients, he said, simply build up to the level of physical activity they are comfortable with. The most likely hurdle, Young said, is that nerve endings to the heart don’t grow back as quickly, if at all. That means the heart muscle doesn’t get the message as quickly when it’s time to start pumping faster as a person exercises. Rather, it responds more slowly to the hormones received through the blood stream, requiring a transplant patient to warm up more slowly during exertion.
That squares with Tyler’s experience thus far, her mother said. “She still gets a little frustrated, saying, ‘I can’t do anything.’ But it’s coming along.”
At school, she’s back in the classroom after finishing last year at home. Tyler said her classmates know about her surgery but don’t make a big deal about it. She did, however, get to help her teacher deliver a lesson on the internal organs. “I talked mostly about the heart,” Tyler said.
Last week, she was among the Ochsner patients recognized before a New Orleans Hornets game. Basketball is her favorite sport. And, no surprise, Chris Paul is her favorite player.
At home, meanwhile, Keysla Green said she’s transitioned the family, including Tyler’s 13-year-old brother and her two younger sisters, who are 9 and 6, to a heart-healthy diet. She said her siblings don’t treat her any differently, though Keysla Green said the other children certainly noticed when their sister got a shopping spree courtesy of the Make-A-Wish Foundation.
“She didn’t even ask for much for Christmas. There wasn’t much left she needs or wants,” her mother said. “But I’ll have a surprise or two for her.’’
Green said her Christmas message is simple: The recognition that her sick child has a second chance. And she said she will again remember the family whose child lost a life for another.
Advocating for more families, even parents of young children, to discuss organ donation openly, Young said: “There is no doubt in my mind having talked to families that have been through this, it is a source of comfort years down the road to know that there was something good that came out of something so horrible.”
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