She’s just 16, but Reena Zuckerman knows exactly what she wants to be doing in another 10 years. “My dream is to play on the press team in the annual Women’s Congressional Softball Game,” says the aspiring political journalist. Since 2009, the event has pitted members of Congress against the press corps, raising nearly a million dollars for charity. “When I’m not doing schoolwork or watching TV, I’m listening to political podcasts and NPR,” Reena confesses.
It’s an impressive goal, but one that’s no doubt attainable for this driven teen, who’s been pushing herself to defy expectations since she was a baby. Her accomplishments are all the more remarkable considering that she was born with a serious gastrointestinal condition.
A whole new world
Reena’s parents, Deena and Brian, knew as soon as she was born that she would need surgery. “Her stomach was incredibly distended,” remembers Deena. “She was transferred immediately to Boston Children’s Hospital.” There, the infant underwent surgery by Dr. Tom Jaksic to repair a volvulus, a life-threatening condition that occurs when the intestines twist. The subsequent blockage can cut off blood flow, destroying tissue.
Like many children who undergo surgery for this problem, Reena lost a substantial amount of her bowel — about two-thirds of her small intestine — in the process. As a result, she was left with short bowel syndrome (or “short gut”), a serious condition that prevents the body from extracting the nutrients it needs to survive. She spent the first three and a half months of her life in the hospital.
“It was all somewhat surreal,” says Deena. “But we very quickly learned about short-gut and the treatment that entails — a world that was entirely new to us.”
Full speed ahead
Deena and Brian decided very early on that, in spite of short bowel syndrome, their daughter would have as normal a childhood as possible. Although a g-tube inserted in her abdomen supplemented her meals by delivering nutrients directly to her stomach, they were determined not to let it slow her down.
“I had to be more careful than other kids when I was climbing on the jungle gym at recess,” recalls Reena. “But I didn’t really feel that much different from my friends. The g-tube was normal to me.”
At the same time, the Zuckermans took advantage of the resources available to help ensure that Reena would thrive. Because she was expected to have some developmental delays from the time she spent in the hospital — and, her parents later discovered, had also suffered a stroke in utero — she underwent physical, occupational and speech therapy. Deena also credits participation in a feeding group with helping her developing eating and swallowing skills and preventing food aversions.
Meeting the challenge
That last piece was even more important than Reena realized at the time. As she was about to enter first grade, her intestines had started to adapt and improve their ability to absorb nutrients. Her clinicians at the Center for Advanced Intestinal Rehabilitation (CAIR) had good news: If she could increase her nutrient consumption by drinking high-protein beverages, she could likely have the g-tube removed. Her response was that of a typical 6-year-old.
“I said, ‘No!’” laughs Reena. “That stuff tastes terrible.”
But then her uncle made her a deal. “He told me that if I drank those shakes for a month, he would donate blood. That was a huge motivator for me.” Sure enough, Reena was able to overcome her dislike of the shakes and meet her goal. Soon, her care team removed the g-tube — and her uncle came to Boston Children’s to make good on his promise and donate blood.
A wonderful outcome
Now, a decade later, one of the few reminders of Reena’s diagnosis is what’s on her plate. “When I open up my lunchbox, the contents are pretty different from what other kids have, because I need to eat more calories,” she says. Deena admits she initially found it challenging to get those calories to Reena while still ensuring that her younger daughter, Ariela, didn’t feel slighted. “In the beginning, Ariela wanted to know why Reena got more ‘special treats’ like milkshakes than she did,” Deena says. “Then the CAIR team gave me tips for hiding extra calories, like adding butter or mashed avocado to her meals.”
Those extra calories give Reena the energy she needs to do the things she loves, whether that’s volunteering at her synagogue, overseeing lighting for school plays or answering questions about short bowel syndrome from students in Dr. Jaksic’s class at Harvard Medical School.
It’s the wonderful outcome of years of hard work and determination by all of the Zuckermans. “Sometimes it feels like you’re taking two steps forward and one step back, but that’s okay. You just have to keep going,” says Deena. “It’s incredible to think of that sick little baby and see the fabulous teenager in front of us today.”
Learn about the Center for Advanced Intestinal Rehabilitation.