Toddler by day, kidney care superhero by night

Nicklaus enjoys life as an adventurous toddler, loving nothing more than playing with rocks and cars and taking trips to the farm with his dad to ride on the tractor. His sunny presence hides the challenges he faces from being born prematurely and with kidney complications. At birth, he had only 5% kidney function, a blockage in his urethra and an enlarged bladder that required a 72-day stay in the neonatal intensive care unit (NICU).

Kidney disease can affect individuals at any age but hearing that their child entered the world with a chronic condition was overwhelming for Nicklaus’ parents. “His diagnosis was devastating. It was very hard on our family,” his mom, Kayla said. “We went through a lot, and we came out stronger.” The family recently celebrated Nicklaus being added to the national kidney transplant waitlist. 

When Nicklaus was still in the NICU, his care team presented two options to treat his kidney disease: hemodialysis (HD) and peritoneal dialysis (PD). HD is typically administered in a dialysis center, and PD allows treatment at home. While there are inherent challenges with all kidney care therapy options, Kayla chose PD treatments for Nicklaus so they could manage his disease at night while he sleeps. “With PD, I’m able to give Nicklaus a normal childhood … I’m incredibly grateful for it,” Kayla said. 

Each treatment filters and cleans toxins from the blood and removes extra fluid using the body’s peritoneal cavity. Through a remote patient management digital health platform, Nicklaus’s treatment data are automatically sent to his care team to enable them to monitor and adjust the therapy, as necessary. His home therapy is further supported through the delivery of his dialysis solution directly to their house. 
 

Kayla attributed her ability and confidence to be Nicklaus’ dedicated caregiver to the support and guidance provided by his attentive clinicians. “Our healthcare team has been amazing," Kayla said. "Seeing him with a tube in his abdomen was scary. They were very patient and understanding, and they helped me feel at ease." 

Kayla has amassed a wealth of knowledge in the past two years of highs and lows. Her advice to other families going through a similar journey is don’t be scared. "It’s a lot to take in. The doctors and nurses will help you. Listen to them," Kayla added.

Access to treatment options and caregiver support is crucial for patients living with chronic kidney disease.