12-Year-Old with Rare Always-Hungry Condition Lands Back in Hospital

12-Year-Old with Rare Always-Hungry Condition Lands Back in Hospital
Alexis and Jenny Shapiro
Gillian Laub

updated 04/18/2014 at 06:00 PM EDT

originally published 04/18/2014 07:15PM

Alexis Shapiro – the 12-year-old girl whose rare metabolic condition caused her to gain 151 lbs. and feel constantly hungry – was readmitted to the hospital on Wednesday, a month after she had sleeve gastrectomy surgery, her doctor tells PEOPLE.

"An upper endoscopy performed Thursday confirmed a small, contained leak from the upper stomach," says Dr. Thomas Inge of Cincinnati Children's Hospital Medical Center. "It's a place where leaks commonly happen after the procedure because the stomach is thinner in that area, and the staples have a harder time closing it completely." The concern with a leak, he explains, is that anything swallowed, like food or spit, could pass into the bloodstream and make a person sick.

Fortunately, this did not happen in Alexis's case, because the leak was fully contained. "Her body had successfully walled it off and prevented any harm from it," says Inge, who sees that as a positive sign: "The fact that she'd already started to heal before we even knew about it tells me that she’s going to be fine with this."

Alexis continues to be monitored and the doctors are hoping to aid the healing process further. "We passed a temporary feeding tube into her nose and down beyond the leak so that we can give her good nourishment," says Inge. "After bariatric surgery – particularly this operation – this little girl is not hungry, and we need to make sure that she gets enough nutrients to heal."



That could take up to two weeks, but Inge says Alexis will likely leave the hospital today and continue as an outpatient for another week before heading home to Texas. "In the big picture, what we're looking at is her weight loss of 22 lbs., and the fact that her blood sugar remains normal, and that she's off oxygen and sleeps comfortably and overall, that she's just done so well," he says. "I am cautiously optimistic that this will not be any setback at all. She is a healthy 12-year-old from the standpoint of her immune system and her ability to heal."

Alexis's mom Jenny grew concerned last weekend when Alexis – now 178 lbs. – said her shoulder hurt. According to Inge, because of the way the nerves interact, significant shoulder pain can indicate something going on below the diaphragm. Alexis came back to Cincinnati, where she'd undergone sleeve gastrectomy surgery on March 21 after complications forced Inge and his team to forgo performing a gastric bypass.

Alexis's story gained attention in late 2012 when her insurance company refused to pay for weight-loss surgery to treat her hypothalamic obesity, which she developed after having brain surgery two years ago.

That prompted an online crowd-funding campaign, which raised more than $86,000 to help cover surgery expenses.

"It's amazing how many people care and want to support her," Jenny, who has created a Facebook page to post updates on Alexis's health, tells PEOPLE.

"She is doing well," she says. "This is just a pebble in the road."

12-Year-Old Alexis Shapiro Has Complications During Weight-Loss Surgery

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