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

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.  The couple met with Dr. Joseph Borer, director of the Boston Children’s Bladder Exstrophy Program, Lauren Cullen, a nurse practitioner, and Rosemary Grant, a registered nurse, as well as experts from the Advanced Fetal Care Center. Collectively, they put a plan into place for Julia’s birth and treatment. “We had a prenatal ultrasound, fetal MRI and a meeting with genetics,” Sean recalls. “It was a whirlwind of a day, but a great day. We got a ton of information and a lot of clarity about bladder exstrophy.” Borer, Grant and Cullen with the Ryan family Complete primary repair of exstrophy (CPRE): An all-in-one option  Borer told the Ryans about Boston Children’s preferred treatment, a bladder reconstructive surgery called Complete Primary Repair of Exstrophy (CPRE). The more...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories Advanced Fetal Care Center bladder exstrophy bladder exstrophy program Department of Urology Joseph Borer Source Type: news