‘I’ve never seen anyone walk out of NICU before’
After being born with a rare condition, 11-month-old Max Do leaves Advocate Children’s Hospital for the first time
It was a day Dan Do thought he might never get the chance to see.
On Monday, Do’s son Max donned a spiffy white and navy blue outfit with a bow tie and graduation cap. Max was ready to go out of the hospital doors and into a new chapter of his life.
Dozens of doctors and nurses lined up in the hallway of Advocate Children’s Hospital in Park Ridge blowing bubbles and performing a song for Max, who was celebrating several firsts. He began taking his first steps, and days before his first birthday he would be seeing the outside world for the first time after spending his entire 11-month life in the neonatal intensive care unit due to a rare condition that prevents him from absorbing the proper amount of nutrients from food.
Do, whose father describes his son as a “people person,” was known as “the mayor” of the NICU. The hospital staff at Advocate Children’s Hospital wanted to see Max’s infectious smile just one more time before he left what had become his home away from home.
“I’ve never seen anybody walk out of the NICU before,” said Dr. Michael Cappello, the Advocate Children’s Hospital vice chairman.
“I was so excited for him because everything is going to be an adventure for this little guy, and now he is going to get a brand-new world for him.”
Max was born at 31 weeks, small enough to fit in the hands of his parents. His stomach was significantly bloated.
During his first days of life Max underwent surgery in an attempt to relieve some of the pressure in his abdominal area.
“We thought that was it,” Do said. “But two days later his stomach started to blow up again. … We just celebrated too early, and that all came crashing down.”
The next couple of months were spent trying to figure out what was wrong.
“In his case, too much water continues to go into the intestine such that everything moves its way out,” Cappello said. “So the challenge with this is it doesn’t give enough time for absorption of any nutrients.”
After a series of tests Max was diagnosed with congenital sodium diarrhea, a condition with as few as 50 cases ever reported. Max was the only case of his specific mutation.
“There was a time we thought we were going to lose him,” Do said. “At one point we were mentally preparing for that.”
But once a diagnosis was given, a plan to stabilize the bubbly infant became easier.
“His ability to get to that point and have so much normality otherwise is because of the nurses,” Cappello said. “Mom and Dad were outstanding every day, and I want to give credit to Max because Max has had a ton of curveballs thrown him and he swung hard and managed to knock each one of them out of the park.”
Max is fed intravenously so he can absorb and maintain the proper amount of nutrients.
“The short-term goal is to reduce the amount of IV nutrition he gets such that he’ll be able to start taking in traditional food,” Cappello said. “The long term is for him not to need IV nutrition anymore and eat like anybody else would, but it will remain
to be seen how that will all happen.”
Though Max was able to celebrate milestones such as learning how to clap, crawl and walk, his parents were still able to appreciate the smaller moments with their son.
Kim Nguyen , referred to as “supermom” by the hospital staff, was emotional when looking back on one of the times she bonded with Max during his stay in the NICU.
“He tried to pull (me) like to say, ‘Pick me up,’ ” Nguyen said. “The first time he did it made me feel like, ‘Oh my, I’m a mom.’ ”
Do said he bonds with his daughter and Max during story time.
“He looks at me, and in his eyes I see that he recognizes me, like, ‘This is Dad. I feel safe here, I’m calm, I’m in my zone,’ ” Do said.
Now with Max home, Do said his son was all smiles when he woke up in his
crib.
“His sister went through a whole range of emotions,” Do said. “There was confusion, some jealously and then acceptance. She’s a great big sister.”
At home,Max also has two nurses working with him to help with his IV nutrition, which was necessary for him to have been discharged.
And though elated to have their son finally home, both parents are
in “survival mode as they continue adjust and continue learning about Max’s condition.
“We don’t know if he’s going to have a normal life, but we’re going to try our best and take him out with all of the food and machinery that he has,” Do said. “It’s cliche to take it day by day, but that is the mantra you have to live by.”