The rise of social media has made it possible for us to access information and connect with people around the world in seconds. For some, these connections can be extraordinarily powerful.
Recently, NBC’s Bay Area Proud told the story of a stranger who gave the ultimate gift of life to a two-year-old patient at Lucile Packard Children’s Hospital Stanford after following his story on Facebook and learning he would need a kidney transplant to survive.
Kaleb Perry has prune belly syndrome, a rare condition that is characterized by missing or severely weak abdominal muscles and problems with the kidneys and bladder. Kaleb’s diagnosis and initial treatment began months before he was born. When his mother, Mandy Perry, was four months pregnant, an ultrasound showed that that Kaleb was not able to urinate, which was backing up his kidneys. Doctors at Packard Children’s were able to perform fetal intervention, conducting five in utero surgeries throughout Mandy’s pregnancy to drain Kaleb’s bladder. The Perry family was told that it was likely their son would one day require a kidney transplant.
Shortly after Kaleb’s first birthday, he was placed on the kidney transplant list. When his parents learned they were not matches for their son, they became desperate for a solution. His kidneys were declining rapidly, and he came close to requiring dialysis. Mandy turned to the Facebook group she had been maintaining to share updates with friends and family about her son’s condition. She asked followers to consider getting tested to find out if they could be a match for Kaleb’s kidney.
“I had to get brave and it’s hard for me to ask people for something so big like that, but I had to because Kaleb can’t speak for himself,” Mandy told NBC.
Within a month of posting her plea, Mandy received a message from someone she had never met. It simply said, “It looks like I’m going to be a good match for Kaleb.”
That message was from Susie LeRoy. She had been following Kaleb’s story on Facebook after seeing her friends share links to his page. As a mother of three young children, she says she saw herself in Mandy, and her own children in Kaleb.
“This need could have been put on me. If I have something that can save the life of their son, why not give them that?” Susie said. “I’m just a piece of the puzzle, and I’m happy to be,” she told NBC.
On May 28, 2019, Kaleb and Susie both underwent surgery at Stanford to remove the kidney from Susie and place it in Kaleb. Susie was able to return home a few days later, and Kaleb was discharged from the hospital a few weeks after the surgery.
Today, Kaleb is thriving as an energetic toddler, and gets together frequently with Susie’s family in the Fresno area, where they both reside.
“It’s just so surreal that this all happened and that someone would literally give a part of something to someone to just give him life,” Kaleb’s dad, Kevin, told NBC.
While Kaleb was successfully matched with an altruistic donor, most kidney recipients get an organ either from a living relative or from a deceased donor.
Unfortunately, the current system for allocating kidneys from deceased donors doesn’t adequately take children’s needs into account, according to transplant surgeon Amy Gallo, MD, assistant professor of surgery at Stanford. An algorithm for organ allocation introduced in 2014 reduced the priority previously given to pediatric recipients.
“In general, there is a shortage of organs and people can wait a long time for transplants,” Gallo said. For children, living with renal failure is especially harmful because it interferes with growth and development.
Gallo would like the allocation system changed to allow kidneys from deceased donors under age 18 to be offered first to child recipients. “These kidneys will do really well in kids, but they’re not always being offered to children under the current system,” she said, adding that the current system does not accurately evaluate the quality of pediatric kidneys.
The system compares each organ donor to a hypothetical “ideal” 40-year-old donor. But kids are not small adults, and applying an adult standard causes pediatric kidneys to receive falsely poor scores, Gallo said. In particular, kidneys from donors aged 5-10, which have the potential to last the longest, are scored poorly and tend not to be offered to children who could benefit from them.
Gallo has been working with medical groups across the country to raise awareness of the problem.
“People like Susie who come forward as non-directed donor are absolutely amazing,” Gallo said. But these donors are fairly rare, and some children need organs from deceased donors to help return them to health and get their development back on track. “As a pediatric transplant community, we really have to protect the needs of these very fragile patients,” she said.
Learn more about registering to be an organ donor at RegisterMe.org.
