Stories about: Donna Morash

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.

Read Full Story