Chris Lange, FISM News
Little Max Do, who was born with an extremely rare genetic condition ‘literally walked out’ of a Neonatal Intensive Care Unit just in time to celebrate his first birthday with his family, according to a neonatologist who helped care for the once gravely ill infant.
In an interview with Fox News Digital, Dr. Michael Cappello said the NICU staff at Advocate Children’s Hospital in Park Ridge, Illinois dubbed Max the “mayor of the NICU.”
“You could not turn away from him,” Cappello said of Max’s oversized personality and charisma which inspired the affectionate moniker.
“He was really a huge part of our NICU family.”
Cappello marveled at Max’s remarkable transformation from a “pretty sick little guy” born nine weeks premature to a beaming one-year-old who “literally walked out of the NICU.”
“That has never happened before,” the doctor said.
Illinois baby dubbed ‘mayor of the NICU’ released from hospital before first birthday https://t.co/eFMqYoXlsX
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While mother Kim Nguyen was pregnant with Max, doctors immediately recognized the infant’s abnormally extended belly as a sign of serious bowel complications. Following Max’s June 4, 2021, delivery by emergency C-section at 31 weeks, a designated medical team led by Cappello immediately took him into their care and began conducting genetic testing on his tiny body. He was eventually diagnosed with congenital sodium diarrhea — an extremely rare condition caused by a genetic mutation that depletes vital sodium and water levels in the intestines.
“The type of mutation he has — no one else has ever had that mutation recorded,” Cappello said. “There are approximately 15 other patients that do have a mutation on that gene, but they’re different.”
Max underwent a total of four surgeries in the first two months of his life. Throughout the course of his treatment and care, Capello and his team worked together to formulate a life-sustaining mixture of food replacements and doses of electrolytes that are fed to Max through an IV-like device to ensure his proper growth and prevent severe dehydration.
Max’s parents were understandably overjoyed to receive the news that their miracle baby would finally be able to come home.
“He’s a chunky boy right now but when he was born … he fit in our hands,” Max’s father, Don Do, said at an Advocate Aurora Health forum following Max’s discharge from the NICU.
“There was a time we thought we were going to lose him, too, and were mentally getting ready for that,” Do admitted.
He said Max was “all smiles” when he was finally brought home, particularly when he met big sister Ivy for the first time.
“She’s a very good big sister,” Do said. “Really loving, really sweet.”
Do said his son “just loves people,” and prefers social interactions over playing with toys.
“It’s a really exciting case that his outcome was as good as it was,” Dr. Cappello said. “It took a great team effort from everybody here … to figure out what he actually had, and, when we did, how to best take care of him.”
Due to the rarity of the disorder and lack of data, the prospect of finding a cure for Max and other patients struggling with congenital sodium diarrhea seems remote.
Still, Dr. Cappello offered an encouraging message of hope as he reflected on Max’s remarkable story, telling Fox News that “anything is possible.”
“You always have to face every situation understanding there’s going to be challenges and the outcomes may not be great, but you go into it assuming you’re going to win,” he said. “That’s what I want people to have — hope.”
Max will continue to visit the GI team at Advocate Children’s Hospital so doctors can keep tabs on his progress. A nurse helps with his care at home.