The biggest hurdle in transplanting children who need a new liver or kidney is finding a healthy organ.
“It’s not a secret that there aren’t enough organs from deceased donors to meet the needs of patients who are sick and need those organs to live or have a better quality of life,” said Riccardo Superina, MD, a world-renowned pediatric hepatobiliary surgeon and Head of Transplant Surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago.
But thanks to living donors, relatives or sometimes strangers who are qualified and willing to donate a portion of their liver or a kidney, many more pediatric patients who require transplantation have a chance at life.
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 Juan Caicedo, MD, who helms the program’s joint effort at Northwestern Medicine.
The decades-long hospital collaboration means both organ donors and recipients receive the best and most appropriate and ethical comprehensive care possible from separate teams.
At just six months old, Miya was diagnosed with biliary atresia, a rare condition in infants in which the liver’s bile ducts are blocked, making bile unable to leave the liver and damaging it irreparably. She needed a liver transplant to survive.
Her parents, Melissa and Vince will never forget the moment they found out Melissa was a candidate to be a living liver donor, meaning she could donate a portion of her liver, the only organ in the body that can regenerate, to her daughter.
“We were incredibly relieved and felt so lucky to have the option of a living donor,” Melissa said. “As a friend described it, ‘I was given the gift of giving Miya life…twice!’
Having a living donor meant that Miya would be stronger going into transplant, as she would no longer potentially get sicker while waiting, and that would be encouraging for her recovery.
Now six months since her transplant, Miya is “happier and has more energy than she did before,” Melissa said.
“She loves playing with puzzles, being outside, trying new foods and making us laugh,” Melissa said. “We’ve been working with Lurie Children’s physical therapy, and she just started taking some supported steps!”
Lurie Children’s has been a leader in pediatric kidney transplants since 1964, when the hospital performed Illinois’ first kidney transplant in a child. Since then, it has performed over 700 more. About 30 percent of Lurie Children’s kidney transplants involve an organ from a living donor.
Patients like 14-year-old Nikolas, whose Aunt Lan donated a kidney to him, have benefitted from the hospitals’ experience and leadership in transplantation.
Nikolas was diagnosed with nephrotic syndrome, a kidney disorder that can permanently damage the organ. In 2018, a kidney transplant was necessary to save his life. Now 14 and in 8th grade, Nik says he feels “like a normal kid,” and enjoys playing basketball and being at school with his friends.
For his Aunt Lan, the experience has made her bond with her nephew even more meaningful.
“I look at the scars on the center of my abdomen and it is still surreal to me that a piece of me is inside him,” Lan said. “It is very special.”