By Emily Williams
When Kitty and Adam Greenhalgh found out that their family of three would get an addition, the thought never crossed their minds that he would be their “miracle baby.”
Just as her experience had been with Wade, her first son, all seemed well with Walker for the first 22 weeks of Kitty’s pregnancy. There was a small concern about his kidneys, but the doctor assured her that bilateral dilated kidneys were common in boys and the problem would resolve itself.
“We were so relieved to reach that 22 mark, because that’s one of the biggest checkups,” Kitty said. “So, when I went back for my 29-week we were shocked. His kidneys were so large and I had no amniotic fluid. So, when the doctor suggested that it was time to check on the baby, I was scared.”
When the test results came back, Kitty and Adam were introduced to a disease that they had never considered a threat, chronic kidney disease.
“We had absolutely no idea what that meant,” she said. “We didn’t know anything about it or how it would affect his life. We knew nothing about kidneys and we still don’t know a lot.”
The knowledge shook the family and began a battle that will last a lifetime for Walker. He faces a lifelong struggle to keep his kidneys from failing and, at some point, the family is prepared to tackle the hurdle of a transplant.
“Usually, a doctor will wait until a child is 25 pounds before they consider a transplant,” Kitty said. “So, as of right now, if he were to go on dialysis, he still wouldn’t be able to get a transplant until he’s big enough.”
Even with all of his kidney complications, Kitty still sees the silver lining. More often that not, kidney issues like Walker’s can be paired with Down syndrome.
“I think to myself, thank God this is something that isn’t as outwardly visible,” she said. “It’s something that doesn’t have to visibly define him.”
But, sometimes that cloak can be a bigger hurdle, according to Kitty, because people look at her bright-eyed, smiling son and don’t see the disease, so they don’t realize its severity.
Walker’s disease affects not only his kidneys, but the rest of his body. He has high blood pressure, he has high potassium, he has low sodium, his growth is stunted and he is prone to anemia.
“He could go into renal failure basically at any moment,” she said. “All it would take is for him to get the stomach bug and I’d have to pack a bag and head to Children’s. His immune system just isn’t that strong and if he were to get a transplant, it would be even weaker.” After a transplant patients are put on immune blockers to protect the foreign organ from rejection.
Walker is prepping to start receiving a regular administration of growth hormones. It’s a process that Kitty is dreading because he is so mobile now, and his legs are strong enough to put up a fight when it’s time for medication.
“He’s a little behind in size,” Kitty said. “In terms of development, he’s right on target with any other kid his age.”
Walker can walk and unintelligibly talk with the rest of his one-and-a-half year old peers, he just does so in clothing fitted for a 12-month-old.
According to Kitty, most of the kidney baby families she has met or heard about have been firstborn children, and having her first son, Wade, around has maybe been one of the biggest aids.
“He was four when Walker was born, so he’s well aware of what is going on and we’ve been very open with him about everything,” Kitty said. Wade has given Walker a better sense of normalcy, someone to play with and someone to learn from.
Both Kitty and Adam’s families live in their hometown of Mountain Brook, so having grandparents around to pitch in and help with Wade has been a blessing, according to Adam.
“I’d almost say it’s a blessing in itself that we had Wade, because if Walker had been out first, I don’t think we could have tried for a second. It just wouldn’t seem fair,” Kitty said.
Beating the Odds
Walker was a baby that Kitty and Adam prepared to lose and are prepared to lose at any moment, but beyond the everyday struggles, Walker’s health has pushed the boundaries of what doctors expected.
“Most kids are on dialysis once they are his age,” Kitty said. “And many receive transplants by the time they are four, but Walker is going to prove them wrong.”
“My dream would be for him to make it all the way to college without having to be transplanted,” Kitty said.
She admits that her optimistic outlook goes well against the statistics, but she said there is always room for a little hope when she looks into the eyes of her “miracle baby.”
The Greenhalghs are quick to remind themselves that other families aren’t as lucky to have the funds and access to provide their children with the equipment and care they need.
The Greenhalghs are a short drive away from one of the best Children’s hospitals in the Southeast and Kitty is able to stay at home full-time and administer Walker’s medications three times a day.
“We maxed out his insurance after two trips to the hospital,” Kitty said. “And that’s a good year.”
After finding out that their son has chronic kidney disease, Kitty became involved with the Alabama Kidney Foundation to learn more about what Walker’s life would be like.
“It’s great because we’re getting to see (children) that have gone through dialysis, the transplants, the medication, everything,” she said. “We just met one family who had a kidney baby. Hopefully, Walker can grow up with him and have someone around who is going through the exact same thing that he is.”
The foundation not only provides an emotional support system for families, but financial support as well.
“They can’t pay for every child’s medications, but they provide transportation for kids that live outside of the city, which is huge,” Kitty said. The foundation also has a support plan that helps parents fund their daily living needs.
This year, Walker will be honored as patient chair for the foundation’s annual Kidney Walk on April 30. The event will be held at Samford University’s track and soccer stadium. For more information, visit www.alkidney.org.