Before Dayja Davis came into the world, a routine ultrasound on her mother revealed serious problems: cysts in the baby's kidneys and low levels of amniotic fluid.
“I had an emergency C-section, and Dayja was born prematurely, under 4 pounds," Dayja’s mother, Keyonna Cooper, of Metairie, said. "Her little body was full of fluid … and her blood pressure was through the roof.”
Transported to Children’s Hospital in New Orleans, Dayja was diagnosed with polycystic kidney disease, a disorder that can sometimes be treated. But doctors also discovered something even more worriesome: a rare genetic disorder called Caroli Disease, often a precursor to liver failure.
“The particular form of kidney disease which Dayja has is also related to Caroli’s disease, which affects her liver,” said Dr. Maria-Stella Serrano, head of pediatric gastroenterology and hepatology at Ochsner Hospital for Children. “Both organ diseases are characterized by fluid-filled cysts, and over time, they can become more inflamed and more fibrous, preventing the normal functioning of both the liver and kidneys. Many of these patients eventually need transplants."
For the past three years, the Ochsner Multi-Transplant Institute has performed more liver transplants than any other hospital in the United States. Ochsner doctors did 213 transplants in 2015; second up in sheer volume was UC San Francisco Medical Center, which did 159 transplants that same year.
Both UCSF and Ochsner rank consistently high for outcomes across both liver and kidney transplants. There is controversy nationally that some centers will not take less than perfect organs for fear it will drag down their statistical outcomes. In spite of their volume, however, out of 199 hospitals evaluated, Ochsner ranked seventh in kidney transplant outcomes across the United States, according to HealthGrades.com.
“If you’re wondering how this facility in the Southeast does so many more liver transplants than anyone else nationally, it’s because Ochsner has taken a very aggressive approach to liver utilization and figured out how to use what’s available," said Dr. John Seal, an Ochsner surgeon who specializes in abdominal transplants. "When other centers turn organs down, we have learned how to optimize them. Time is not a luxury (for) patients waiting for organs.”
For Dayja, the first order of business was to make sure she was healthy, and that meant spending the first six months of her life at Children’s Hospital.
When she came home, she had a feeding tube and what’s known as a PICC line — a catheter into a vein that allowed her mother to give her antibiotics and other medications intravenously.
“I’d never taken care of a really sick child before, so I was suddenly reading up on everything,” Cooper said.
Working as a cashier when her daughter was born, Cooper changed course to become a medical assistant in the nephrology unit at Ochsner.
"I was starting from ground zero," she said. "I made a decision to be home with her and care for her until she was well enough to enter preschool at the age of 4.”
PE had to be very limited, and there was perpetual teasing from schoolmates over her enlarged abdomen, a symptom of her disease. But in spite of it all, Dayja says she loved school.
“My mom always told me I was born sick, and that one day I’d have to replace my sick organs with new ones,” said Dayja, now 9.
At the age of 7, Dayja went on the transplant list, awaiting not one but two organs, kidney and liver. Less than two weeks later — very soon, in the transplant world — a call came from Ochsner at 6 a.m. that organs had been found.
Within hours, Dr. Trevor Reichman, who now practices in Virginia, was performing the combined organ transplant.
“Liver transplants have been done since the early 1960s, but outcomes back then were not great," Seal said. "We have seen major improvements over the decades, stemming from better trained surgeons, shorter surgery times, and ancillary problems with arteries and bile ducts much improved. Additionally, anesthesia is better these days."
But the real improvement came in the advances in immunosuppressants, drugs used to stop the recipient’s body from rejecting donated organs.
Dayja just started second grade at Phoebe Hearst Elementary School in Metairie, where she's on the honor roll. She loves giraffes, loves to dance — and she wants to be a doctor when she grows up.
“Make that choice when you register for a driver’s license,” Serrano said, “or register online. Whatever else you do, make sure your family knows you wish to be a donor.
"In death, you have the supreme opportunity to save someone else’s life.”