Advocate Children's Hospital

Sweet Sendoff for ‘Mayor' of the NICU Whose Incredibly Rare Illness Hospitalized Him for 11 Months

A little boy from Chicago is finally going home after spending 11 months in the NICU being treated for a rare condition.

Advocate Children's Hospital

Max Do has been the talk of the Advocate Children’s Hospital neonatal intensive care unit for months, because the NICU has been his home for 11 months.

“Emotionally, it’s been a little bit exhausting,” said Dan Do, Max’ dad.

When his mom, Kim Nguyen, delivered Max at 31 weeks last June, the preemie’s distended belly showed a sign that something wasn’t right.

“The first couple of months were the hardest because we didn’t know what was wrong with him,” Dan Do said.

After a couple of surgeries and batteries of tests, doctors soon realized that Max was born with congenital sodium diarrhea, a condition with as few as 50 cases reported, and Max is the only child ever reported to have one specific genetic mutation.

“We did find he had this rare variant, so this helped us understand what our biggest challenge would be, which is how to provide adequate nutrition,” said Dr. Michael Cappello, Advocate Children’s Hospital Vice Chairman of Pediatrics.

It took months to figure out how to best care for Max and, during that time, staff members simply fell in love with the smiling, happy baby, they affectionately nicknamed the ‘mayor’ of the NICU.

“Everybody would come and say hi and he’s just smiling,” said Kim Nguyen, Max’ mom.  

Max still needs to get his nutrition through an IV, but after 11 months in the NICU, doctors gave his family the okay to take him home on Monday, just days before his 1st birthday.

Wearing a bowtie and graduation cap, holding hands with the nurses, Max took a few steps, the first toddler to ever walk out of the NICU at Advocate Children’s Hospital in Park Ridge.

“Everyone is ecstatic that he gets to go home with his family and see things he’s never seen before, but also a little sad because he’s been such a huge part of our NICU family,” Cappello said.

Max’s mom was overcome with emotion at the sendoff that included the staff singing, “We will say goodbye to you. Can’t believe how much you grew,” to the tune of Twinkle Twinkle Little Star.

“The nurses treat him like family. They love Max how we love Max,” said Dan Do, Max’ dad.

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