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. 

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.”

The bladder exstrophy team that reconstructed Julia's bladder
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 commonly-performed Modern Staged Repair of Exstrophy (MSRE) involves three surgeries, the first of which occurs within two to three days of birth. The second and third surgeries are completed within the child’s first few years of life.

In contrast, CPRE is a single procedure done six to eight weeks after birth. This extra time between birth and surgery allows a newborn a window of time to grow and bond with her parents. So, Tori and Sean decided to pack up and temporarily moved to Boston.

“It was one of the most difficult decisions of our life, because family is super important to us,” Sean says. “It was hard to leave our girls, Kaitlyn and Claire, but ultimately, we had to do what was right for our whole family. That meant coming to Boston.”

Thankfully, Tori’s parents jumped in to care for their granddaughters at home in South Carolina.

Welcoming baby Julia

As planned, Julia was delivered by C-section at Brigham and Women’s Hospital, connected by indoor bridge to Boston Children’s.

“Dr. Borer was there as soon as Julia was born,” Sean recalls.

Julia, who was born with bladder exstrophy, pictured with her sisters Claire and Kaitlyn
Claire, Kaitlyn and Julia

In addition to bladder exstrophy, Julia was born with visual and hearing impairment on her left side and an absence of some nasal cartilage. Borer and his team worked with other Boston Children’s specialists to coordinate her complete care.

“One of the luxuries of receiving care at Boston Children’s is the ability to draw from the best and brightest teams in any field of medicine or surgery,” Borer says. “This was critical for Julia’s smooth course.”

Correcting bladder exstrophy 

Julia is a ‘superstar’ and I could not be more delighted with how well she has progressed ~ Dr. BorerSoon after Julia was born, Tori and Sean brought her back to their Boston apartment. For the next three weeks, Julia had the chance to develop and bond with her parents.

Twenty-six days after she was born, Julia underwent CPRE. Borer, Grant and Cullen were by the Ryans’ side every step of the way.

“During the surgery, we got hourly updates 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 before she was discharged. One month after surgery, the Ryan family was cleared to leave Boston and bring Julia home to South Carolina for the first time.

Today, Julia is doing great. Tori and Sean say the “Big Three” — Borer, Grant and Cullen — are officially part of their family.

“They helped us through one of the scariest times of our lives,” Tori says. “The level of care we received from these three amazing individuals was far beyond anything we could have imagined. Not only are they experts in the urology field, but they are experts in patient care.”

Julia, who was born with bladder exstrophy, pictured with her family
The Ryan family with Tori’s parents, Tony and Gigi Pieretti

“I could not be more delighted with how well she has progressed,” says Borer. “Julia is a superstar.”

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