Lawrence toddler finally gets liver transplant, and ‘it’s working beautifully’

How to help

A yard and bake sale to benefit Addison Whitenight’s family will be from 11 a.m. to 3 p.m. Sunday, Oct. 12, at Broken Arrow Park, 29th and Louisiana streets. Family and friends have donated items.

Also, the family will be collecting brand new toys to donate to Children’s Mercy Hospital.

“They are desperately in need of new toys,” Addison’s mom, Shawna Davis, said. “So, we are going to have a birthday party and all of her presents are going to go there. She doesn’t need any toys.”

Editor’s note: We are revisiting the story of a family whose life has been affected by organ donations. The family and two others were first featured in February 2008.

The call finally came for the little east Lawrence girl who has been fighting for her life.

Addison Whitenight, who will turn 2 on Oct. 21, received a new liver last week at Children’s Mercy Hospital in Kansas City, Mo., after waiting 16 months on the transplant list.

“She’s wonderful,” her mother, Shawna Davis, said. “She’s white. She’s pink. I’ve never seen her that color.”

That’s because she was born with jaundice and diagnosed with biliary atresia at age 6 weeks. Only one in 15,000 babies are born with the disorder each year in the United States. It’s like a birth defect where the drainage system in the liver didn’t form correctly.

Since then, Addison developed rickets or a softening of the bones. She broke her arm and leg in April and her other leg in July because of her fragile physical condition. Each incident required casts for several weeks. Addison also has struggled to gain weight. Just before the transplant she weighed 19 pounds and was on a feeding tube for 18 hours a day. She also received 20-hour calcium infusions on top of 10 medications orally and was hooked up to a heart monitor most of the time.

The only definitive cure was a new liver. Since receiving that gift from Denver during a six-hour surgery on Sept. 24, Shawna described her daughter as a “completely different kid.”

“She’s even spunkier than before,” she said of Addison, who managed to smile, laugh and give her older brother, Cameron Whitenight, a hard time in spite of her illness.

Her nurse agrees.

“She’s doing great,” Angela Tendick, hepatology program coordinator at Children’s Mercy, said. “Her surgery was textbook perfect, and Mrs. Addison had herself off of the ventilator within 24 hours.”

Tendick expects Addison to return home next week if there are no complications. The one-year survival rate for liver transplants is about 95 percent for children Addison’s age.

“It’s always a new fear,” Shawna said. First, it was whether they would get the organ donation and whether it would be in time. Now, it’s a fear that Addison’s body will reject the new organ.

“Rejection is in the back of my mind. We are not even thinking about it,” Shawna said.

So far, Tendick said there are no signs of rejection.

“It’s working beautifully. Her body loves it,” she said. “You just wait for the perfect donor and that’s what we got for her.”

Still, the next year will require close monitoring. There will be lots of lab work and frequent adjustments to medications. Like before, Addison’s mom and dad, Jeffrey Whitenight, will have to limit her time outside the home and watch her exposure to possible infections.

But, much will be different.

“It’s going to be hard to get back to normal because for the past two years it’s been our life,” Shawna said. “I am not going to know what to do without having a feeding tube to hook up. You know, just going and laying her in the crib and that’s all I have to do.

“Before transplant, I felt like there was never going to be an end. I felt like this is never going to be over, but now I do.”