Stories about: bladder exstrophy program

Daphne’s story: Lifting the fog on bladder exstrophy

Girl with bladder exstrophy playing at home

The day of their 18-week prenatal appointment was the first day of the most difficult period in Pam and Jon’s life. When the ultrasound technician couldn’t see their baby’s bladder, a second ultrasound was ordered to see if the bladder would become visible with another look. The question remained: Could it be something benign or a serious medical issue?

Pam panicked. Jon tried to stay calm. They had so many questions, plus a 2-year old daughter, their careers and a house to take care of. Their beloved Red Sox were playing in the World Series. Family and friends offered, with the best of intentions, conflicting advice.

The second ultrasound confirmed that their baby would be born with bladder exstrophy, a rare and complex birth defect where the bladder develops outside of the body. No one they knew had ever heard of the condition, not even their obstetrician.

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A ‘superstar’ homecoming: Julia’s journey for bladder exstrophy care

Julia, born with bladder exstrophy, is pictured being held by her mom and dad

Julia Ryan was born on March 2, but her journey to Boston Children’s Hospital began months before her birth.

During Tori Ryan’s pregnancy, doctors near her home in South Carolina diagnosed her unborn child, Julia, with bladder exstrophy, a rare and complex birth defect where the bladder develops inside out and is exposed outside of the body.

“There were a lot of tears,” says Tori’s husband, Sean, of receiving the news about their daughter. “It was hard. We had to balance our own worry with the excitement our two older daughters felt about having a little sister.”

Their concern for their unborn baby led the Ryans to Boston Children’s. 

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From Athens to Boston: Bladder exstrophy patient made “the best choice”

This past February, Giorgios Bampos was born in Athens, Greece, with a rare urological condition called bladder exstrophy. Deeply concerned for their son and committed to learning all they could about the condition and its treatment, his parents spoke with medical experts in their home country and extensively researched on the Internet.  They quickly determined that Boston Children’s Hospital was the best place for their son to get well.

“The day my son was born was a very difficult day. They told me he had a problem. I did not know what it was. I was very scared at first,” according to Theodos Bampos, the boy’s father.

Soon, Theodos came to understand the complex nature of his son’s problem. Bladder exstrophy is a congenital condition in which a baby is born with the bladder inside-out and exposed on the outside of the body. Affecting only about one in every 40,000 babies born, bladder exstrosphy is treated through surgery early in a baby’s life and then monitored with regular follow-up as the child grows.

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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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