When CT technologist Aaron Rhoads and his wife Vanessa found out they were expecting their first child in 2018, they knew it would change their lives forever.
What they didn’t realize is that their son’s birth would mark only the beginning of a lifelong journey that has in many ways helped them find their “true calling.”
A rare diagnosis
Channing Rhoads was born at Michigan Medicine in November 2018 and doctors immediately began treatment for his previously diagnosed aggressive Autosomal Recessive Polycystic Kidney Disease, a rare genetic disorder that affects approximately 1 in every 25,000 children.
ARPKD causes a child’s liver and kidney to develop abnormally, often leading to a termination of proper function.
“Children born with ARPKD typically have their kidneys removed immediately,” Aaron Rhoads said.
So at 5 days old, Channing had his kidneys removed one at a time. He would remain on dialysis until he was big enough to receive a transplant.
Meanwhile, daily management of electrolytes and vital signs — along with the dialysis — lie immediately ahead.
“At one point, around three months old, he had a massive stroke,” Vanessa Rhoads said. “It was a really scary time. He lost all head control and other functions and had to learn them all over again.”
To this day, Channing remains in treatment for speech and occupational therapy to help him reach his age-based milestone goals.
‘I barely had to think about it’
Channing would remain in the neonatal intensive care unit for his first six months before being discharged home.
After Channing turned one, the transplant team accepted a referral from the nephrology team.
“When I found out I was a match, I immediately volunteered to donate one of mine,” Aaron Rhoads said.
“That decision was second nature to me — I barely had to think about it. I had a chance to help my son and I was going to take that chance no matter what.”
In June 2020, Aaron and Channing underwent dual surgeries at U-M Health — one to remove the kidney from Aaron and one to transplant it into his son.
Amazingly, that wasn’t the last time the Rhoads family would go through such a challenging day.
Another transplant, another donation
Due to Channing’s diagnosis, doctors at Mott and Von Voigtlander Women’s Hospital kept a close eye on Vanessa when she became pregnant with their second child, daughter Everly.
“During an early ultrasound, they could tell pretty clearly that Everly also had ARPKD,” Vanessa Rhoads said.
This time around, the family knew what to expect. When Everly was born around Christmas 2020, surgeons removed her kidneys.
She would go on to develop a few infections and even some hernias, which were surgically repaired.
Once discharged to undergo dialysis at home and await transplant after she turned one year old, the question became who would donate to Everly.
Vanessa — a match with her daughter — immediately raised her hand.
About a month ago, in late August 2022, Vanessa and Everly were back at U-M Health, ready for those same dual surgeries that Aaron and Channing had undergone more than two years before.
The surgeries were a success. And now, all four Rhoads family members are back home — each with one working kidney.
Care teams come through
The Rhoads’ can’t say enough about the care they received at C.S. Mott Children’s Hospital, University Hospital and across U-M Health.
“This couldn’t have happened without everyone around us stepping up,” Aaron Rhoads said.
“From HomeMed teams to volunteers, nurses in the NICU and more, they’ve all been incredible and have made our journey and this time in our life so much better.”
Vanessa echoed those thoughts, acknowledging that there were some prior relationships from Aaron’s work life and her previous career as an administrative assistant in nephrology at Michigan Medicine.
“They’ve become like family to us,” Vanessa said. “One of Channing’s godmothers is one of the NICU nurses who took care of him and others have become great family friends.”
The couple also said their local community and church provided never-ending support on their journey.
Now, as the family continues to heal from the latest surgeries and looks to the future, they said it’s important to pay it forward.
For instance, Vanessa has been an Office of Patient Experience peer mentor for the Pediatric Kidney Transplant Peer Mentor Program at Michigan Medicine since November 2021.
“We’ve gone through so much with our children in just a few short years and know how challenging it is,” she said.
“But we also know how rewarding it is. Both Aaron and I have had the opportunity to give our kids another chance at life. That’s pretty incredible to think about.”
“I feel like spreading that message is our calling right now — and that’s what we plan to do.”
Written by Daniel Ellman.
If you care about kidney health, please read studies about big causes of chronic kidney disease, and what you need to know about kidney disease and COVID-19.
For more information about kidney health, please see recent studies about how to protect your kidneys from diabetes, and results showing drinking coffee may affect your kidney health.
