Illinois Baby, Who Spent First Year of His Life in NICU, Finally Goes Home

Illinois Baby neonatal intensive care uni Max Do NICU Mayor of NICU illinois advocate children's hospital Dr. Michael Cappello Dan Do Kim Nguyen emergency cesarian section rare genetic condition distended stomach congenital sodium diarrhea

By Lili Scott , Parent Herald Jun 10, 11:18 am

Photo: (Photo : MOHAMMED HUWAIS/AFP via Getty Images)

After staying in the neonatal intensive care unit (NICU) for the first year of his life, an Illinois baby, with a rare genetic condition, has finally gone home in time to celebrate his birthday.

Max Do was confined at the NICU of Advocate Children's Hospital in Park Ridge, Illinois since he was born nine weeks early via an emergency cesarian section on June 4, 2021. His doctor and neonatologist, Dr. Michael Cappello, told Fox News that he was a "pretty sick little guy" as a newborn.

However, in the months since he was receiving his treatments, Cappello said that Max developed into a happy baby who likes to wave to everyone, even to those who are not part of his team of medical workers.

"So, he definitely is the mayor of the NICU," Cappello said.

Max Had Congenital Sodium Diarrhea

Max is the second child for mom, Kim Nguyen, and dad, Dan Do. Kim said that they knew there was a problem with the baby from the ultrasounds during her pregnancy, which showed that he had a distended stomach.

Doctors think that the fetus' amniotic fluid wasn't flowing as it should inside her belly. Thus, Kim's baby belly also bloated rapidly.

Following his birth, Max had surgery but it didn't stop the fluid from building up in his stomach. Cappello said that they had to figure out what was wrong with Max "right away" because his life is at risk. After a series of genetic and blood tests, they diagnosed his condition as congenital sodium diarrhea.

Speaking with Good Morning America, Cappello said that there are about 15 to 50 people in the world with congenital sodium diarrhea but Max is the only person "in recorded history to have on that gene that particular mutation."

This basically means that the baby's gene mutation variant cannot properly regulate the sodium and water in his intestines. If his body loses sodium and water fast, he could dehydrate or develop electrolyte imbalances and cardiac arrhythmia. So, in the first few months at the NICU, Max had to be fed via a central line.

Max also needed more surgeries that were rough on him and his parents. Dan had real fears of losing his son because his frail body was subject to so many procedures. In the early months, Max was just sleeping and recovering from these procedures.

The parents were with their son every day until the doctors believed that Max was ready to go home just a couple of weeks shy of his first birthday.

Max "Graduates" from NICU

According to NBC Chicago, Max is still getting his food via an IV but his family was given the green light to take him home. On his "graduation" from NICU, Max wore a graduation cap and a tiny bowtie. He held hands with the nurses and then walked out of the NICU like a boss.

Cappello said that they were all ecstatic to watch Max leave the hospital. At the same time, there was a little sadness because the baby became part of the family for the NICU team. Days after his release, Max had a birthday party at his house with his parents and his older sister, Ivy.

He is expected to keep checking in with the gastro-intestinal team at the Advocate Children's Hospital so that his health and progress will be monitored. The family has a nurse helping them out at home as well.