Author: Tom Ulrich

Determined to get back in the game

04 22 2014 Kyle Arieta ISeventeen-year-old Kyle Arieta lives for football, but as his mother is quick to note, football doesn’t define him. Instead, she points to a quiet determination that he’s learned from his years on the playing field. It’s an attitude of pushing through and moving beyond that’s served him well in the game, and which drove him to get back on his feet after the brain tumor.

When the southeastern Massachusetts native went to bed one night last May, he’d been having headaches off and on for a while. They weren’t all that bad, more like a mild cold that wouldn’t go away.

That next morning, though, it was clear that the headaches had been a sign of something more. Kyle awoke in head-splitting pain—and nearly blind.

By the end of the day, he was at Boston Children’s Hospital, where neurosurgeons performed emergency surgery to remove a tumor growing in his pituitary gland—a pea-sized part of the brain that acts like a control room for the body’s hormones.

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Babies born extremely premature are surviving. How do they do in the long run?

The NICU at Boston Children's Hospital in 1976

Thirty years ago, no one would have expected babies born extremely prematurely—between 23 and 25 weeks’ gestation, considered the edge of viability—to survive long enough to worry about what the future might hold for them as third graders.

But times change. Treatments like surfactants and prenatal steroids, along with improvements in ventilators and nutrition, have often enabled children born in that “gray zone” to survive.

Thus, doctors and parents now can start to ask questions about the long-term development of extremely premature babies. How will he do—physically, cognitively, intellectually—in the long run? What impairments might she face, and how severe will they be?

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An unusual route to saving a child’s eye

Poppy Biagini (left) and Liam Klagges (right), each with the white glow of retinoblastoma in one eye. (Courtesy Dana Biagini and Amy Klagges)

All Poppy Biagini’s family knew was that something was off about her right eye. Liam Klagges’ family’s first sign that something was wrong was that his eyes didn’t always track properly, and that his left eyelid hung a little lower than his right.

Both children, it turns out, had a tumor called a retinoblastoma. Usually diagnosed in children younger than 5, it’s rare—only about 300 children in the United States are diagnosed with it every year—but grows rapidly from the back of the eye. For that reason, doctors have to start treating it as soon as it’s diagnosed, lest it fill the eye or start invading surrounding tissues.

There are a few different ways of treating retinoblastoma, such as chemotherapy, radiation or enucleation (surgical removal of the eye). But both Poppy and Liam’s families elected to try something different—a procedure called intra-arterial (IA) chemotherapy that delivers treatment right to the tumor. Today, both children still have both eyes because of it.

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Rolensky’s story: saving his heart by fixing his brain

Rolensky

In the fall of last year, a young woman named Gerdline walked into Hospital Saint-Nicholas in Saint-Marc, Haiti, carrying her baby son Rolensky. Only four months old, the boy was in a bad way: thin, breathing rapidly and lethargic, with a bluish tinge to his skin.

Little did Gerdline know as she crossed the hospital threshold that Rolensky’s heart was failing—because of a one-in-a-million blood vessel malformation in his brain. Nor did she know that the two of them would soon be on a plane to Boston, where doctors from across Boston Children’s Hospital would come together around her boy to save his heart by fixing his brain.

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