Christmas brings time of joy for child, family

Holiday brings fourth month of health after boy has kidney transplant in fight against disease

Friday, December 24, 2004

Andrew Nally enjoys scooting on his tush across the floor of his familys Bowling Green home.

His favorite word is look. He plays with his trucks and blocks, rides on a vehicle similar to a tricycle and is fascinated by the Disney show The Wiggles, Christmas trees and Santa Claus.

He wasnt scared of him at all, the 19-month-old toddlers mother, Amy Stewart, said of his visit with Santa. Everything is going wonderful. Its the best Christmas I could ever ask for.

They may not seem like unusual activities for a toddler, but theyre blessings that Stewart said she enjoys watching daily.

Andrew has Eagle-Barrett Syndrome, a rare disorder that, according to WebMDs site at www.webmd.com, is characterized by partial or complete absence of the stomach muscles, failure of both testes to descend into the scrotum and/or urinary tract malformations.

One in 40,000 babies have it. About 50 percent die at birth, and 25 percent die before they turn 2 because of kidney failure, Stewart said. Andrew has no stomach muscles and his illness has affected the muscles of his urinary tract.

Stewart gave a kidney to her son in a transplant Aug. 25 at Vanderbilt University Medical Center in Nashville. Since then, Andrew has been doing things that Stewart had only dreamed of seeing him do.

Hes eating a little bit, she said. He even took off trying to walk.

Stewart was 20 weeks pregnant when she found out her unborn child was ill. She went for a routine checkup and the doctors found something wrong with Andrews kidneys.

She didnt know exactly what he had until after he was born.

When Stewart was 37 weeks pregnant, the boy was born at Vanderbilt. Andrew spent 12 days in Vanderbilts neonatal intensive care unit. Six days after Stewart took him home, her infant got sick again and they had to return to Vanderbilt. He had bacterial spinal meningitis and was on life support for 11/2 weeks.

Before his transplant, Andrew had endured three surgeries and had received 12 hours of dialysis daily.

After his transplant, he spent four days in pediatric critical care before being moved to a regular room, where he remained a week before going home, Stewart said.

He didnt stay home long.

Part of his incision had busted open. He had a hernia, Stewart said. He had another surgery, so he was in the hospital for another week.

Since then, the family has settled into life at home. Andrew takes anti-rejection drugs, antibiotics for infection and side effects and stomach medicine, Stewart said.

He gets part of his nutrition from a feeding tube and goes to Vanderbilt Childrens Hospital in Nashville regularly for tests and lab work.

His immune system will constantly be compromised, she said. A common cold wouldnt mean anything to you or me, but it could put him in the hospital.

His new kidney is functioning well, though, and although he still has a catheter, he has had wet diapers something his doctors did expect because of his disorder.

The first year is the biggest risk for rejection, she said.

Andrew gets physical therapy through First Steps, which helps developmentally delayed children. Susan Pardue works with him regularly and has noticed big changes in Andrew since his transplant.

I started working with him in February. His assessment says he was just starting to sit up for five to eight seconds, roll from his side to his back, and he could hold 25 percent of his weight through his legs, she said.

Before his transplant in August, he could scoot a bit, sit up as long as he wanted and hold 50 percent of his weight in his legs.

Now, Andrew scoots everywhere on his bottom and can hold the position of being on his hands and knees for a few seconds.

He has pulled up to stand and can walk three to four feet when someone holds both of his hands, Pardue said.

Last week he used a push walker five to eight feet, she said. Ive worked with children for 10 years and Im amazed in the difference of his standing. Hes pretty amazing.

Pardue said she can tell Andrews family has worked with him, too.

Theyre just wonderful to work with, she said. They do constructive play with him. He feels so much better and hes surrounded by love.

Stewart said she wants to help other families who are considering kidney donation.

I would tell them not to be scared. I cant tell that Ive just got one kidney, she said. Ive just got a four-inch scar on my right side. Id do it again.  Daily News ·813 College St. ·PO Box 90012 ·Bowling Green, KY ·42102 ·270-781-1700