Then and Now: Former NICU patient Max gives back and fosters community
When Max was born six weeks premature in 2005, his parents never would’ve suspected that he would have a health complication. His mom Michelle had a typical pregnancy until she went into labor, so she and her husband Steve assumed their baby was just arriving a few weeks early. But about one hour after Michelle gave birth, doctors told her they thought something was wrong and that Max needed to be rushed to Children’s Memorial Hospital (now Lurie Children’s).
“I remember thinking ‘it can’t be right, they must have made a mistake,’” Michelle said. “I specifically remember thinking there's no way this could actually be happening.”
Max was soon diagnosed with tracheoesophageal fistula (TEF), a rare condition resulting from an abnormal connection between the esophagus and the trachea, which are typically two separate tubes. Left untreated, instead of Max’s esophagus connecting to his stomach, his esophagus was a “blind pouch” meaning he wouldn’t be able to eat or drink by mouth. At seven days old, Max had surgery to connect his esophagus to his stomach. He then spent the first two months of his life in the hospital, and the first year of his life was filled with doctor's appointments.
Despite the challenges of Max’s condition, his parents were grateful to have access to medical expertise and world-class care tailored to meet his needs. As a child, he had dilations every few years to expand his esophagus and he continues to undergo regular endoscopy procedures to screen for cancer, in addition to taking daily medications. Max’s condition makes him statistically more prone to esophageal cancer, so he will continue taking these preventative measures for the rest of his life to prevent cancer.
“Not only did [Max’s medical team] take care of him, but they took care of us,” Michelle said. “I always feel so comfortable when we go there because I know they know what they’re doing. This condition is very rare, so it’s not like you can just walk into any doctor’s office, and they’ll know exactly what this is and how to treat it.”
Giving back and forging connections
Today, Max is a 17-year-old high school senior who has not only learned to live a full life with a medical condition, but also hopes to help others do the same.
“TEF is definitely still a big part of my life,” Max said. “But I’ve gotten used to it and I don’t let it dictate my life. It’s a part of who I am but it doesn’t define me.”
In recent years, Max has turned his focus to ways he can give back to Lurie Children’s and foster community among others with TEF. During the summer of 2021, he taught tennis lessons to kids in his neighborhood and donated a significant portion of his earnings to Lurie Children’s.
Max is also uniting the global TEF community by organizing conference calls for people impacted by TEF. Since TEF is a rare condition, impacting approximately 1 in 4,000 births, Max had never met anyone else with TEF throughout his childhood and teen years. Through the conferences, he creates opportunities for people of all ages to connect and learn from one another.
“I know a few things about TEF so I have the ability to help a lot of people who might not know as much as me. And I know there are also a bunch of people who are older than me who know more than I do,” Max said. “I think one of the most significant things to come out of that call was knowing that no one is in this alone.”
The meetups have prompted many thankful responses from participants, including parents of babies with TEF and adults older than Max, who all learned from the experience and left with new knowledge about the condition.
One father of an eight-month-old with TEF told Max after the call that at first, he was worried his child wouldn’t be able to have a typical life but was reassured after connecting with others that his child would thrive.
If you are interested in joining Max’s TEF community, including participating in group conference calls, please fill out this form.
“It was a very proud moment for us as parents, you're helping other people in a way that will hopefully make their lives better and make their lives as parents a little bit easier,” Michelle said.
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