Even though Israel “Izzy” Munoz is not yet two years old, his mom, Shirlin Hidalgo, says he is already such a bundle of joy.
“Izzy is such a light,” Shirlin says. “Everyone knows him for his smile. No matter what he’s been through – long hospital stays, dialysis, infusions – he is always smiling.”
When Izzy was an infant, Shirlin and Marco Munoz, Izzy’s dad, learned that due to a rare kidney disease, he would need to be put on the kidney transplant list. With the help of his care team at Atrium Health Levine Children’s – recognized by U.S. News & World Report among the best in the nation for pediatric nephrology care – Izzy is able to have the best support while he waits for his new kidney. Levine Children’s is home to the region’s only Pediatric Nephrology Center of Excellence, which is dedicated to research, education and continually improving the patient experience.
Unexpected News
Shirlin says she had a typical pregnancy with Izzy, and everything went smoothly – until it was time to deliver. Izzy’s heart rate dropped dramatically, and they had to do an emergency C-section to deliver him safely.
Luckily, Izzy didn’t need to go to the neonatal intensive care unit (NICU) when he was born. But when it was time to do the hearing test in the hospital, Izzy didn’t pass.
“He had three different tests done, but all the results came back saying that he wasn’t responding to sound,” Shirlin says.
Although Izzy was referred to an audiologist for more testing, Shirlin and Marco remained hopeful and continued to talk and sing to him in hopes that he could hear them. But when the test results came back, the news is not what they expected.
“We learned that Izzy is deaf – he has congenital hearing loss,” Shirlin says. “We saw multiple doctors and had genetic testing done, which showed that Marco and I are carriers of this gene, and there’s a 25% chance it could happen again with any future kids.”
Overwhelmed and still trying to process the news that her newborn was deaf, Shirlin started looking into options for her son. At six months old, Izzy was fitted for hearing aids. Since he responded well to those, Shirlin and Marco decided to get cochlear implants for Izzy (a surgically placed device that helps with severe hearing loss) to help with long term speech and development.
But just when Shirlin and Marco thought they were getting a handle on Izzy’s hearing, a new curveball was thrown their way.
Another Twist
When Izzy was seven months old, his health suddenly started to deteriorate. He had recurring stomach bugs and respiratory infections that racked his little body. After multiple trips to the pediatrician, urgent care and emergency department, Shirlin knew something wasn’t right.
Then, at about ten months old, he started battling another sickness, and Shirlin took him to Levine Children’s Hospital. Expecting to hear that it was just another virus, Shirlin was shocked when she learned that Izzy’s sodium level was so low, he was at risk of having seizures. The hospital immediately rushed him to the pediatric intensive care unit (PICU).
“I was so confused because he had been happy and healthy, growing and eating and meeting all the milestones,” Shirlin says. “The hearing impairment had been challenging and draining, and now there was this new thing I didn’t understand.”
While Izzy was in the PICU, he started to have severe swelling in his hands, feet, legs and head. Shirlin was told the swelling – known as edema – could be related to his kidneys, so she was connected with the pediatric nephrology team.
More tests and a biopsy confirmed that Izzy has nephrotic syndrome – a kidney disorder that causes your body to pass too much protein in your urine. While it was a relief to have some answers, the diagnosis also raised more questions as to which type of nephrotic syndrome it was. Shirlin learned there are different kinds of nephrotic syndrome – some which kids can grow out of, and others that are lifelong and generally require a kidney transplant.
Then, on the same day that Izzy had his cochlear implant surgery, test results about his nephrotic syndrome came back. Izzy had congenital nephrotic syndrome – the scenario Shirlin and Marco hoped they wouldn't have to face. This meant their baby would be facing a lifelong battle and eventually need to be put on the kidney transplant list.
“It was very hard news to get,” Shirlin says. “I was in denial. I didn’t know what to do next.”
Shirlin started working closely with the team of pediatric nephrology specialists at Atrium Health Levine Children’s. Shirlin says Dr. Susan Massengill, the medical director of nephrology and one of Izzy’s pediatric nephrology specialists, has become a rock for them in this time of uncertainty.
“I am beyond grateful for Dr. Massengill and everything she has done for us in this journey,” Shirlin says. “She has become part of our family.”
“Izzy is a remarkable young boy and though he’s been through a lot, he’s never not smiling,” says Massengill. “He brigthens our day at each visit.”
Massengill explains that unlike other forms of nephrotic syndrome, this form does not respond to immunosuppressive medications; there is no cure and kidney transplant is the only option.
“Often with this condition, we bridge the time to transplant with dialysis which means Izzy has been coming for dialysis three to four times a week, for four or more hours each time, to rid the body of excess fluid and waste products,” says Massengill. “This is no small feat for a toddler. In Izzy’s case, he is currently awaiting a kidney transplant and although a kidney transplant is the answer for his congenital nephrotic syndrome, a transplant is not an absolute cure. Izzy will always have chronic kidney disease in need of lifelong medications and additional kidney transplants.”
Seeking a Brighter Future, One Day at a Time
As Izzy gets older, his care team continues to adapt his treatment plan to conquer new challenges that arise. And while he awaits a new kidney, he still lights up when he goes to the hospital.
“It’s like he knows that going to Levine Children’s will make him feel better,” Shirlin says. “He knows he will be surrounded by people who love him and want to help him. It puts me more at ease to know he is comfortable going to the hospital.”
While some families are able to look ahead to next steps, Shirlin, Marco and Izzy are taking things one day at a time, and crossing their fingers that a kidney is available soon.
“I’m excited for the opportunity for Izzy to get a new kidney. He will be unstoppable,” Shirlin says. “He has a care team at Levine Children’s who are happy to help him, and I know there’s hope out there to make it happen.”
In the meantime, Shirlin continues to help Izzy do what he does best: Outshine his condition and inspire those who have the joy of knowing him. He is meeting many developmental milestones and finds lots of joy in music and videos that keep him smiling.
“I’ve said to myself from the very beginning, this condition doesn’t define him,” Shirlin says. “No matter what he has going on physically and the challenges he faces, who he really is on the inside won’t change. He is still the brightest light in the room.”
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