EDITOR'S NOTE: This is the final part of a three-part series on 2-year-old Hayden Brazil's battle with congenital nephrotic syndrome.

By Mason W. Canales

Killeen Daily Herald

As Hayden Brazil runs around her house playing with the dogs and calling out "Hi" to her mother, there is no sign that the 2-year-old child has suffered from a rare kidney disorder.

An observer wouldn't be able to tell she has spent nearly the first two years of her life making almost weekly doctor visits or has undergone two life-altering surgeries to treat congenital nephrotic syndrome — a disorder that can lead to heart problems, renal vein thrombosis, acute kidney failure, chronic kidney disease, infections, malnutrition and fluid overload.

"From our standpoint she has done amazingly well," said Dr. Raymond Quigley, director of the dialysis program at Children's Medical Center in Dallas and one of Hayden's doctors. "She is just over 2, and the transplant occurred back in March. If you didn't pull up her shirt to look at the scars on her abdomen, she looks like a normal kid."

Four months after her final surgery, in which Hayden received a kidney from her dad, Adam Brazil, she is finally living a normal child's life. Her sister, Kindle, 5, is having sleep-overs and Hayden is playing right along with the other children.

"We play in the pool and she likes me to push her," said Kindle about playing with her sister in ways she couldn't before. "We like to play with my friends."

Another fun activity for the two is the trampoline, even though Hayden still really isn't allowed to jump on it.

For Jamie Brazil, Hayden's mother, keeping up with Hayden has become more of a challenge.

"I have warned the family they might complain that she was too active," said Quigley.

The months after the surgery continued to be full of doctor visits, but now they have time for themselves and for Kindle, 5, to pick up dancing again. On Tuesday, Kindle had a dance recital.

"We have been really busy after the surgery," said Jamie Brazil.

Hayden spent 10 days in the hospital — four of which Hayden remained sedated after she received her father's kidney, which would worry any mother, said Jamie Brazil. But the family knew the surgery was a success right away.

"As soon as I got the call that she was peeing, I was so excited," said Jamie Brazil, noting the doctors told her that meant the transplant worked.

For a couple of weeks, Jamie and Adam Brazil stayed in Dallas because Hayden needed labs twice a week, with the possibility of needing emergency surgery. But that interval has grown longer — once a week, twice a month, once a month and soon once every two months.

Living with the kidney transplant

While Hayden is feeling better and living a more active life, she will still suffer from this disorder for the rest of her life.

"The key thing is that she will have to take medicine to prevent her from rejecting the kidney," said Quigley.

Then there also is the worry about her getting sick. If she ever gets a fever or feels ill, she will need to be checked by doctors. It could be something a lot more critical than the common cold, such as an infection.

"After the first year, the risk of her getting infections is going to be much, much less," said Quigley, but it is a possibility.

Also at Hayden's age, she will need another transplant at some point in time, he said.

"If you look at the statistics across the board, the kidney transplant will last about 10 years, but we have some that have lasted way more than that," said Quigley. "At some point she may need another transplant, but I am hoping it is 20 or 30 years from now."

With advances in medical technology, there is a chance that in 20 to 30 years there may be a permanent fix for Hayden's condition.

Quigley also said he believed that Hayden's new kidney had a good chance of lasting a lot longer than average because of her family.

"I think in Hayden's case, things went about as perfect as they could, because we learned by treating other patients and her family was very attentive," he said. "Part of the reason everything turned out so well is because her family was very good with her."

Contact Mason W. Canales at mcanales@kdhnews.com or (254) 501-7474. Follow him on Twitter at KDHCoveEditor.

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