Stories about: urology

Our patients’ stories: overcoming bladder exstrophy

Thomas as a baby

On a warm June morning, a District of Columbia tour guide stops in front of the Korean War Memorial. Pointing out the 19 statues erected in tribute to soldiers who gave their lives in the conflict, he explains that the impressive seven-foot sculptures are meant to represent the 38th parallel, the demilitarized zone separating North and South Korea. When he turns to ask the group why a reference to the 38th parallel would only contain 19 statues, 16 year-old Thomas Vincent immediately gets to work and soon has a theory.

Thomas, who is in the nation’s capital to meet his senators and congressional representative as a patient representative of Boston Children’s Hospital, is the portrait of an over-achieving student. When not busy with homework, chances are you can find Thomas practicing for any of the three sports he plays for his school. If he’s not on the field or the court, you might find him tutoring other students or at Spanish club. At first, second and even third glance, he is healthy and vital—the last person you might believe required extensive surgery only hours after he was born.

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Best foot forward

The Packards

The Packards gather around the boulder in their backyard to pose for the picture. Katie passes her bright pink crutches to her mother, and although she needs them to get many places in her life—from school to hip-hop dance class, she’s able to lean against this rock without them.

The photos go well, of course, because the Packard family—mom Cara, dad Brian, brothers Dan and Kevin and sister Laura—is so tightly knit. They’ve come together in ways small and large to help Katie navigate life with spina bifida, a complex birth defect that affects the development of a child’s spinal cord, spine and brain.

But once the photo shoot is over, the rest of the family scatters across the backyard while Katie is still leaning.

“Mom,” she calls, “can you hand me my crutches?”

There she is, a 12-year-old girl, balanced precariously on the edge of the rock, stuck between childhood and adolescence, independence and dependence—between the desire for a regular life and the reality that there are simply things her body can’t do.

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