At just two weeks old, Molly Melton noticed her newborn baby, Leland, spiked a fever. She quickly called Leland's doctor who suggested he may be warm after napping and instructed her to unwrap him and let him cool down. He did briefly before spiking another fever.
"I called her again and she said, 'Yeah, let's go ahead and go to Riley [North],'" Melton explained.
From there, the team at IU Health North sent them to Riley Hospital for Children in downtown Indy, especially once Melton and the care team noticed Leland's fontanel was swelling.
"They said, we're not really comfortable with the difference so we're going to go ahead and ship you down to big Riley," Melton said. "So, we came in the middle of the night. The neuro team was waiting in the room and they did a whole eval and they said hey we're going to keep watching him, we're going to keep measuring him."
The very next day, Melton's husband and Leland's dad, Wade Hummer, left for U.S. Army training. With support from their families, Melton and Leland bravely weathered the next uncertain weeks.
"We were on 7 West for, I think, five weeks until they were like, 'We've tested everything we know to test, we've done a broad-spectrum infectious disease panel, they've all come back negative, we don't know what else to do, so we're going to get genetics involved," Melton explained. "So I said, 'Whatever we have to do, let's do it!' So they swabbed me and they swabbed Leland and Wade swabbed when he came home from training and it just came back that he had this genetic mutation that we did not pass to him.
"Leland has a monogenic, auto inflammatory disorder called PAMI syndrome," Dr. Rebecca Hetrick, rheumatologist at Riley Children's Health, said. "PAMI syndrome is very rare. The part of Leland's body that would normally fight off infections doesn't work like it should. It actually turns on and has a hard time turning off."
Melton explained why little Leland eventually needed a stem cell transplant.
"All of the treatments [Riley physicians] knew to offer were exhausted and he was failing the treatments," Melton explained. "His body wasn't keeping up, he was failure to thrive, he was on a feeding tube. What they thought would work, wasn't sustainable. So, stem cell was the next best bet."
The stem cell transplant began on November 4.
"The donor cells that were given to him, they took over and his blood type changed and his cells changed, and it's helping," Melton exclaimed.
"After we get through transplant, our hope is that we will see his immune system in a much more regulated or normal manner," Dr. Hetrick explained. "But that will look like several years of very close monitoring, looking for complications from the transplant, or signs that his PAMI syndrome has re-emerged."
Dr. Hetrick gave kudos to Leland's parents for being a "wonderful support system." Melton and Hummer gave their thanks to the care team at Riley.
"I get too teary-eyed talking about it but the doctors and nurses are phenomenal," Melton said. "We're totally blessed to have Riley basically in our backyard."
The Melton-Hummer family is not sure when they will get to go home. But for now, they are grateful their little guy is getting the care he needs and that they can be there every step of the way - never leaving his side.
"We're completely and totally blessed to be able to have him as a son and be able to care for him the way that we do," Melton said.
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