Baby With Rare Condition Graduates From NICU After Spending First Year Of His Life There

A one-year-old baby dubbed “Mayor of the NICU” at Advocate Children’s Hospital in Park Ridge, Illinois is finally going home after spending the first year of his life in the NICU.

Max Do was born early at 31 weeks via emergency cesarean with a rare genetic condition, but doctors weren’t sure what was wrong at first.

When Max’s mom, Kim, was pregnant with him, they saw that he had a distended stomach in the ultrasound. Doctors also noticed that amniotic fluid was not going in and out of him how it was supposed to.

His stomach was still distended when he was born, and despite having surgery, it continued to get worse. Doctors knew they had to quickly determine the reasoning behind it.

After running blood and genetic tests, they finally learned that Max had congenital sodium diarrhea, which is caused by a mutation in a gene that regulates the process of how much sodium and water goes into the intestine.

“He is the only person in recorded history to have on that gene that particular mutation,” Dr. Michael Cappello, a neonatologist and vice chairman of pediatrics at the hospital, told ABC News. “We only know 15 other people in the world who have a mutation on this gene at all and are having the same issue.”

Due to his condition, Max had to be fed through a central line to help prevent dehydration and maintain normal body growth.

During his time in the NICU, he had to have four big surgeries just in the first two months alone.

After a year of receiving the best care in the NICU, Max was finally deemed well enough to go home, where he finally met his older sister Ivy for the first time!

Max’s parents home his story will offer hope to other parents whose babies are in the NICU, and also raise awareness about this rare condition.

Hear his story in the video below:

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