Living Life With Dialysis: Helping kids stay kids

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It was a precautionary measure during pregnancy that initially saved Colton Cooke's life. After that, the doctors, nurses and Colton's family took over the job of keeping this amazing little toddler alive and healthy. Medically considered of advanced maternal age, Sheila Cooke was advised to undergo an early ultrasound. During the procedure, an alarming discovery presented itself with two serious medical concerns for her unborn child.

First, doctors could see that the boy was not voiding urine as normal. The diagnosis came back as urethral stenosis. In other words, something was blocking the urethra, and his bladder was dangerously full, nearly to the point of rupture. That problem was solved temporarily with insertion of a bladder shunt while Colton was still in the womb. The second problem could wait until birth, and has shaped their days as a family ever since.

Colton's bladder not voiding at a key developmental phase resulted in his kidneys not developing normally. According to Dr. Jerry Bergstein, pediatric nephrologist and the medical director of Riley Hospital's Pediatric Dialysis Unit, "We knew before Colton was born that he would be experiencing the physical effects of kidney failure from day one." That first day began with a trip from IU Hospital to Riley, where Colton underwent a vesicostomy, the first of four surgical procedures before he could leave the hospital for the first time. In that procedure, Colton's bladder was connected to his abdominal wall. Once urine was flowing safely, doctors turned to treating the effects of his kidney failure. While his kidneys were able to produce urine, they were unable to remove the waste and toxins generated through the body's normal functioning.

That meant dialysis — fortunately Colton and his family were in the care of Indiana's only dialysis unit specifically designed to treat children. "The first 12 months are a critical time for children suffering from renal (kidney) failure," says Cyrena Gilman, director of clinical operations at Riley Hospital's Pediatric Dialysis Unit.

"Our goal was to help Colton and his family get through the first year of dialysis without a major setback. By working together we succeeded." Indeed they did. Colton, now two, continues with the dialysis treatment plan created by his team. In his case, as with most of the dialysis patients at Riley, the treatment is called peritoneal dialysis. "This is dialysis, done at home four times a day, by the family," says Gilman. "We encourage our families not to build their lives around dialysis, then we provide them the training and support to build dialysis around their lives." Is it working? "Absolutely," says Jonny Cooke, Colton's father. "We learned the mechanics of the dialysis procedures and how to prevent the infections that can happen. Now, we've got it down cold, and the doctors and nurses include us as we plan his future treatments. We have experiences and insights about Colton's care and they listen very carefully."

When asked how his son is coping with the many medical treatments, including dialysis four times a day, Mr. Cooke is inspired. "He has accepted it all with a very brave face and some amazingly mature ways." For example? "Well, he will always ask the name of anyone who's working on him or prepping him for a procedure.

Once he knows their name, and can talk to them, he can get through what's happening." As for Colton's current condition, a corrective surgery has repaired the blocked urethra and he is voiding urine normally. While his physical growth was delayed as an expected side effect of diminished kidney function, he is responding well to growth hormones and quickly catching up with other toddlers his age. "He's like any other kid in many ways," says his proud father. "He plays with cars and planes and trains, and bugs his sister like any other little brother does."

Colton's father will soon have another reason to feel a strong connection to his son. A kidney transplant is in the planning stages for a surgery later this fall, and Mr. Cooke is the donor. "With all he's been through, giving up a kidney is an easy choice. His mother and I would do anything to help him live a healthy, normal life." That's also the goal of Colton's team at Riley according to Dr. Bergstein. "After a transplant, the long term prognosis is very favorable. Moreover, Riley has one of the best pediatric transplant programs in the country."

Until then, life in the Cooke family will continue like normal, with dialysis in the background, while a bright and energetic 2-year-old just keeps on playing, growing, asking our names and being brave.

— By Greg Perry

[Keywords: nephrology]

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