What a difference a year makes for 2-year-old kidney patient

Shrieks of laughter and peals of giggles could be heard in the Mayo Clinic Gonda Building on Tuesday as 2-year-old Addie Sylvester and her twin brother Dustin ran around the 19th floor lobby. Amber and Mike Sylvester, their parents, chuckled softly as they watched their children play.

"It's a whole different world today," Mike said.

A year ago on Tuesday Addie received a kidney transplant after being diagnosed with ureteropelvic junction obstruction. Both of her kidneys were completely obstructed at the point where urine goes down to the bladder, allowing her kidneys to fill with urine. Yet it wasn't until after birth that Addie was diagnosed.

Amber's pregnancy had gone well, until the 27th week. During a doctor's appointment at that stage, it all turned upside down.

"I remember that appointment very well," Amber said. "A tech, she had asked me if my water broke. I didn't know why she was asking that, and she said it was because she couldn't see any amniotic fluid around (the baby).

"I remember the one doctor said, this baby has problems. That just sticks with me, and I just cried, because we knew it was very grim," she said.

It was unlikely that Addie would be born alive, much less survive if so. Yet, on Oct. 22, 2012, Amber went into pre-term labor at a regular appointment and delivered the twins through cesarean section.

Both Dustin and Addie were incubated in the Neonatal Intensive Care Unit at Mayo, where Dustin stayed until Nov. 22 and Addie stayed until Dec. 10. It was during her time there that Addie was diagnosed, and the doctors agreed she would need a kidney transplant. The obstruction to her kidneys had led to kidney failure.

Addie's kidneys were removed and she received peritoneal dialysis to expand her abdomen. Both parents were potential donors and they agreed upon a living organ donation, which generally has fewer complications and a shorter wait time, with the organs lasting twice as long.

All that was left was to decide who the donor would be.

"In all honesty, it almost felt like it was a debate in our house," Amber said. Ultimately, the decision came down to age, and kidney size — Amber was both younger than Mike, and had the smaller kidney.

Though the transplant operation went smoothly, the whole next year's time was anything but, Amber and Mike said. Thinking back on how to describe they struggled for words.

"It was a big challenge," Mike said. "You try to manage going to work and getting her lab draws done."

"Nothing about it was normal," Amber chimed in. "That first year was just really difficult. She was in and out of the hospital; it was almost like a cycle."

And even though Addie was the one who was sick, Amber said her brother Dustin went through it with her.

"When she was in the hospital he was, too, even though it wasn't as a patient. He was there versus being outside and doing normal kid things," she said.

When visiting, Amber would lay Dustin in the crib with Addie, and he would reach over to hold her hand, creating a bond that they still share today.

"They wake up from naps and ask for each other," Amber said.

Addie's and Dustin's naps are just one of the signs that the Slyvesters have moved toward normalcy. Last August, they took their first family vacation together, which was significant for them.

Now, instead of discussing who can take off work to take Addie to her appointments, the Slyvesters talk about play dates and family vacations plans.

"For her, her quality of life is significantly better. But even as a family, our quality of life is 100 percent better," Amber said.

Other than eating — she still has a feeding tube — Addie is caught up developmentally. She walks, talks and appears as curious as 2-year-olds tend to be. She will continue to have monthly lab checkups and takes organ transplant anti-rejection drugs twice a day.

Though Tuesday was a momentous occasion for the Slyvesters, the family chose to celebrate the anniversary of Addie's transplant quietly.

"We just want to spend the day together as a family," Amber said. "We just want to be together."

1/2: Addie Sylvester and her twin brother Dustin run around the lobby at the Gonda Building

2/2: Addie Sylvester runs around the lobby at the Gonda Building Tuesday a year after receiving a kidney transplant from her mother at the age of one and a half.