Finding Answers in Atlanta

Doctor and patient

Kelly Whitten has faced an uphill battle from the first day of her life. But she has shown that bravery and a cheerful spirit can help overcome seemingly impossible odds.

Kelly, who was born with Down syndrome, needed heart surgery at just 4 months old. The surgery fixed a hole in her heart caused by an atrioventricular canal defect. As Kelly began to get older, everything seemed to be going well.

“She was thriving,” said Connie Whitten, Kelly’s mom. “I even went back to teaching at a Montessori school and was able to take her to work with me.”

About a year after her heart surgery, the Whitten family was stunned to learn that Kelly had another rare genetic disorder, autosomal recessive polycystic kidney disease. The Whittens were told their daughter would need a kidney transplant by the age of 10. However, Kelly’s kidneys and liver began failing when she was 5 years old.

The Whittens, from St. Petersburg, Fla., were turned down for the kidney and liver transplants at a hospital in Miami. The family turned to Children’s Healthcare of Atlanta. July 1, 2012, Kelly was flown to Egleston hospital to await her new organs. A little more than a week later, she was at the top of the transplant waiting list.

Ten days later, the Whittens received the good news, but it left the family with mixed feelings. Their daughter was finally getting her new organs, but there was a family who had lost a child. “Our hopes are for Kelly, and our thoughts are for the family of the donor,” the Whittens wrote in a blog post July 19, the night before the transplant.

“It’s hard to know that somebody had to die for my daughter to live,” Connie later said.

Kelly left Children’s two weeks after the surgery. The family stayed in Atlanta until September. She needed therapy four days a week, tests three days a week and doctor’s appointments weekly.

Though she still needs daily therapy in Florida, Kelly is making tremendous strides.