Julia Ryan was born on March 2, but her journey to Boston Children's Hospital began months before her delivery.
During Tori Ryan's pregnancy, doctors near their home in South Carolina diagnosed her unborn child with bladder exstrophy, a rare and complex birth defect where the bladder develops inside out during pregnancy and is exposed outside of the body.
The family traveled to Boston to meet with Dr. Joseph Borer, director of the Boston Children's Bladder Exstrophy Program, and specialists from the Advanced Fetal Care Center. Collectively, they put a treatment plan into motion for their baby. "We had several appointments including a prenatal ultrasound and fetal MRI, a meeting with genetics and meetings with Dr. Borer and his team," her dad, Sean, recalls. "It was a whirlwind of a day but a great day."
During the couple's visit, Dr. Borer shared details about the bladder reconstructive process called Complete Primary Repair of Exstrophy (CPRE) — Boston Children's preferred treatment method. Unlike the Modern Staged Repair of Exstrophy (MSRE), which involves three bladder reconstruction surgeries performed within the first few days of life, CPRE allows for initial repair to be done in one procedure six to eight weeks after birth. The delay promotes newborn growth and development and allows for bonding between baby and parents.
The couple temporarily moved to Boston and on March 2, Julia was delivered by C-section at Brigham and Women's Hospital. Four weeks later, she underwent the CPRE at Boston Children's.
"During the surgery, we got hourly updates from our nurse coordinator, and members of their team sat with us and talked about how the surgery was going," Sean recalls. "Afterwards, Dr. Borer came out and told us everything went great."
Julia spent the next 12 days in recovery, was discharged on April 8, and the Ryan family returned home to South Carolina. Today, Julia is doing great — growing and developing and enjoying her family and big sisters, Kaitlyn, 9, and Claire, 6.
And Dr. Borer couldn't be happier. "Julia is a 'superstar,'" Borer says. "I could not be more delighted with how well she has progressed throughout this journey."