CHARLOTTE, N.C. — A Charlotte toddler who was originally treated for allergies is now fighting a rare disease that means he needs a major medical procedure: a kidney transplant.
The condition is so rare that doctors initially misdiagnosed him, telling his mother it was bad allergies.
"He's a very happy baby," mom Shirlin Hidalgo said.
If not for the hospital bed and all the tubes he’s connected to, you might not know that 20-month-old Israel is as sick as he is. The little boy and his mom spent months trying to find out what was going on.
"His eyes were very, very puffy," she explained.
At first, doctors thought it was allergies.
"He was completely swollen," Hidalgo said. "I didn't recognize him. His head was swollen, his whole body was swollen."
Dr. Susan Massengill, the head of Pediatric Nephrology at Levine Children's Hospital, is now overseeing Israel's care after he was initially misdiagnosed elsewhere. She says that's common with these cases.
"They’ve been seen by a primary doctor, the emergency room felt they tend to be allergic, eyes are puffy," Massengill said. "They’ll get put on Claritin, Zyrtec."
Massengill knew immediately, this was not allergies, but rather a rare form of congenital nephrotic syndrome, or kidney disease. They see about 25 cases a year at Levine Children's Hospital.
"This is not something we can fix with medication," Massengill said. "It’s a genetic condition that requires a new kidney — a transplant."
But waiting for a kidney can be a dangerous time because patients like Issy are so prone to infection.
"Because of their tremendous risk for life-threatening infection, when they get a fever they come in the hospital, swelling in the hospital," Massengill said.
Doctors removed his kidneys and Israel is now on dialysis three times a week four hours a day. Hidalgo is thankful and optimistic about the future.
"I'm just very grateful there's something that can be done, it gives me hope," she said.
Israel is on the transplant list. Doctors say pediatric patients typically wait six months to a year for a kidney. They also believe he'll need another transplant as an adult.
"If we look at all dollars spent on research in our country, the least amount is spent on kidney disease so we’re a big center here for nephrotic syndrome," Massengill said. "We do a lot of research and we’re finally making some headway, improving the therapies we have."
Israel's mom is nervous but grateful.
"He's my whole world now," Hidalgo said. "Everything I do is for him."
Contact Michelle Boudin at mboudin@wcnc.com and follow her on Facebook, Twitter and Instagram.