Sweet Sendoff for NICU ‘mayor’ whose incredibly rare condition hospitalized him for 11 months – NBC Chicago

Max Do has been the talk of the Neonatal Intensive Care Unit at Advocate Children’s Hospital for months, as the NICU has been his home for 11 months.

“Emotionally, it’s been a bit draining,” said Dan Do, Max’s father.

When his mother, Kim Nguyen, gave birth to Max at 31 weeks last June, the preemie’s distended belly showed that something was wrong.

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

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

“We discovered he had this rare variant, which helped us understand what our biggest challenge would be, which is how to provide adequate nutrition,” said Dr. Michael Cappello, vice president of pediatrics at the ‘Advocate Children’s Hospital.

It took months to figure out the best way to care for Max, and during that time the staff simply fell in love with the smiling, happy baby, whom they affectionately referred to as the NICU ‘Mayor’.

“Everyone came to say hello and he was smiling,” said Kim Nguyen, Max’s mother.

Max still needs intravenous feeding, but after 11 months in the NICU, doctors gave his family permission to take him home on Monday, just days before his 1st birthday.

Wearing a bow tie and graduation cap, holding hands with the nurses, Max took a few steps, the first toddler to be discharged from the NICU at Advocate Children’s Hospital in Park Ridge.

“Everyone is excited that he can go home with his family and see things he’s never seen before, but also a bit sad because he’s such an integral part of our NICU family,” said Cappello.

Max’s mother was overwhelmed with emotion during the farewell which included the staff chanting: ‘We will say goodbye to you. I can’t believe how much you’ve grown,” to the tune of Twinkle Twinkle Little Star.

“The nurses treat him like a member of the family. They love Max like we love Max,” said Dan Do, Max’s father.

NBC Chicago

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