Last year, Robyn and Ward sent an email to close friends and family making what they called “the biggest ask of our lives.”
The Chicago parents sought a kidney for their then 10-year-old son, Gavin. When he was 3, Gavin was diagnosed with Wilms’ tumor, a rare form of kidney cancer, that required one of his kidneys to be surgically removed. His remaining kidney was damaged from the grueling chemotherapy and radiation his treatment required.
After years of decline, Gavin’s kidney eventually failed, and he required peritoneal dialysis. The nightly ritual of connecting him to a machine for 10 hours of treatment was far from ideal. Long term, a transplant was his best option, and neither of his parents qualified medically to be the donor.
“We are at the end of what we can do with machines and medicines and need to ask for the help of others in the next step to making Gavin well,” Robyn and Ward wrote.
Living Donors: Stepping up for patients with few options
One of the biggest hurdles in transplanting children like Gavin who need a new kidney or a liver is finding a healthy organ, said Dr. Riccardo Superina, Head of Transplant and Advanced Hepatobiliary Surgery at Lurie Children’s and a world expert in pediatric liver conditions.
Parents like Gavin’s know there aren’t enough organs from deceased donors to meet the needs of patients who are sick and need organs to live or have a better quality of life. But when donors who are living step up and are healthy and qualified to donate a kidney or a portion of their liver, many more pediatric patients who require transplantation have a chance at life.
In February, a record – at Lurie Children’s – of five living donors stepped up to facilitate three kidney and two liver transplants to pediatric patients at Lurie Children’s.
“This is a remarkable display of generosity and doing good for your fellow human being,” Dr. Superina said.
Gavin’s donor: An acquaintance raises her hand
When Robyn and Ward’s email found its way to Ann’s inbox, through a connection from the Northside school at which she works and that her daughters attend with Gavin, she knew right away she could be a potential match for him.
Ann was healthy and active, had confidence that she would receive support from family and friends, and most importantly, she shared a blood type with Gavin.
“I just kept thinking about it, and eventually thought, you know, it doesn’t hurt to get checked out,” she said.
After discussing this opportunity with her husband and her director at the school, Ann reached out to Robyn. She was prepared to be Gavin’s donor.
Shocked, Robyn agreed to meet with the woman she knew only tangentially. Over coffee, Ann learned more about Gavin’s journey and was more determined than ever to help him. By that summer, the pieces for Gavin’s transplant were falling into place.
And then COVID-19 changed the way hospitals – and the world – operated.
Delays, and then a joyful reunion
Despite the challenges and limitations brought with social distancing and restrictions due to COVID-19, Lurie Children’s was able to move forward with Gavin’s transplant on Feb. 22.
Gavin, a bright and sports-loving 11-year-old, remained at Lurie Children’s for inpatient care for a few weeks following his surgery before going home. He continues to heal while attending school virtually, playing video games, doing crossword puzzles and monitoring his March Madness bracket.
Gavin will continue to be monitored on an outpatient basis by his team of experts at Lurie Children’s, including advanced practice providers and nurses; Dr. Rachel Engen, Medical Director, Pediatric Kidney Transplant Program; Dr. Priya Verghese, Division Head of Nephrology; Dr. Debora Matossian, Attending Physician in Nephrology; Dr. Caroline Lemoine, Surgical Director, Pediatric Kidney Transplant Program; and Dr. Superina.
Ann stayed at Northwestern Medicine, across the street from Lurie Children’s, just one night before going home to recover. Her continued healing is a small price to pay, she said, for being able to help put Gavin on a path for long-term health.
The duo has met once since the transplant for a quick outdoor reunion where they wore matching fleeces Robyn had made for them.
“It was really beautiful when Gavin and Ann hugged. She is part of our family now,” Robyn said.
Ann agreed, “he literally has a part of me. I know that we’ll stay close.”
Experts at Lurie Children’s and Northwestern Medicine collaborate to make living donor transplantation a safe and effective option for everyone involved. The region’s largest living donor program is led by Dr. Superina; Caroline Lemoine, MD, a Lurie Children’s transplant surgeon and Surgical Director of the Pediatric Kidney Transplantation Program; and Juan Carloes (JC) Caicedo, MD, who helms the program’s joint effort at Northwestern Medicine. Robyn, inspired by her son’s journey, now serves on the board of directors for the National Kidney Foundation of Illinois, which aims to improve the lives of people dealing with kidney disease. For more information on their work, visit NKFI.org.