“A routine ultrasound showed that the baby’s kidneys were enlarged and cysts were developing on them, indicating that the baby may be born with autosomal recessive polycystic kidney disease (ARPKD),” says Nicole.
This condition is caused by a genetic fault that disrupts normal development of the kidneys, causing fluid-filled sacs to develop. Over time, the kidneys become enlarged and scarred as a result of the cysts, causing overall kidney function to deteriorate.
“We were told that newborns with ARPKD have only a 30 per cent chance of surviving their first week of life and a 50 per cent chance of surviving their first birthday” says Isaac. “We were taken aback.”
When Olivia was born at McMaster Children’s Hospital in January of 2014, doctors confirmed that she did in fact have ARPKD. Olivia had cysts covering both kidneys as well as part of her liver. Her liver, although enlarged due to ARPKD, functioned properly. Unfortunately, her kidneys did not.
“She went into end-stage renal failure and started emergency dialysis,” recalls Nicole. “Olivia had continuous-run therapy for about a week and a half to clear her fluids, then she was switched to hemodialysis for about five hours a day.”
Olivia spent her first three months in the Neonatal Intensive Care Unit (NICU). When she was discharged in April, Isaac and Nicole were trained to manage Olivia’s peritoneal dialysis machine so she could have her dialysis treatments at home. Olivia currently undergoes 10 hours of peritoneal dialysis each night while she sleeps.
“We visit McMaster Children’s Hospital once a month for her blood work,” says Nicole. “Olivia is pretty stable right now, and we’re waiting until she reaches the target weight and length for a kidney transplant.”
Olivia has begun work-up for a transplant and a suitable donor is being sought. If all goes well with the transplant, Olivia will no longer need dialysis. Although her dialysis currently takes place at home, Isaac and Nicole recognize the importance of the emergency hemodialysis she received in the NICU, which ultimately saved their daughter’s life.
“The care we received from the nephrology team was amazing. We always had many questions for the team, and they were always so calm and kind. They were great at putting things into terms that we could understand because we had no medical background.”
Isaac and Nicole are relieved that the worst seems to be behind them. Olivia will have a lifetime of chronic illness, but they remain optimistic about the future as research and technology continue to advance for kidney care.
“It’s been an intense 18 months,” says Nicole. “Olivia has been through so much. We know she will do amazing things as she grows. She’s the strongest little girl ever.”
To help children like Olivia, please help the Caring for Little Kidneys Campaign reach its goal of raising $650,000 to redevelop the Nephrology Clinic at McMaster Children’s Hospital so more children can have access to this incredible program when they need it most. Visit hamiltonhealth.ca/caringforlittlekidneys for more information or to donate.