Baby Celebrates First Birthday After Bladder Exstrophy Surgery
Approximately five months into her pregnancy, Stephanie Roche and her husband Travis visited their obstetrician for a routine ultrasound. During this visit, the technician was unable to find Cate’s bladder. The couple spent the next two months repeating ultrasounds with the hope that the bladder could be found. With only a short time remaining in the pregnancy, they were forced to face the very real possibility that Cate was missing her bladder.
Burdened with more questions than answers, the Roches consulted with a urologist at a community hospital, who in turn referred their questions to Mohan Gundeti, MD, chief of pediatric urology and professor of surgery at the University of Chicago Medicine. Two months before Cate was due, Dr. Gundeti delivered the news: Cate likely had a rare congenital anomaly -- bladder exstrophy. When Cate arrived on August 30, 2013, the diagnosis was confirmed.
Treatment of bladder exstrophy
Bladder exstrophy is a birth defect in which babies are born with abnormally formed bladders and related anatomical structures, such as the pelvic floor and genitalia. These structures also protrude through the lower abdomen. Babies with bladder exstrophy also present with an associated pelvic bone deformity – which is a widening of the pelvic ring.
To treat this disease, pediatric urologists perform staged surgeries. The first surgery, perhaps the most crucial component, is designed to reconstruct the bladder, genitalia, pelvic floor and abdominal wall. In performing this surgery, a higher degree of insight, experience and finesse is needed to achieve future excellent outcomes in bladder capacity, urinary continence, pelvic floor musculature, external genitalia, kidney function and aesthetic form. Along with this first reconstructive procedure, an orthopaedic surgeon will repair the baby's pelvic bone, which is wider than average in bladder exstrophy cases.
After the joint surgery is completed, patients' lower extremities are immobilized for a period of time to aid the healing process. Additional surgery may be required at a later time to continue work on continence issues, bladder capacity and genitalia. Despite the challenges posed by this condition, the University of Chicago Medicine Comer Children's Hospital faculty and staff are uniquely prepared to treat and manage babies with bladder exstrophy.
Gundeti, a renowned pediatric urologic surgeon who has a wealth of experience in complex reconstructions, has performed numerous complex urogenital reconstructions on newborn babies with excellent outcomes. In addition to his deep expertise and insight, newborn babies with bladder exstrophy are further supported by a team of healthcare professionals who will help manage a variety of ongoing issues, such as renal function preservation and orthopedic issues. These embedded clinics serve as a support bridge, helping children and their caregivers prepare for successful lives after surgery and into young adulthood.
Cate's unstoppable road to recovery
Stephanie didn't even get a chance to hold her newborn Cate when she was delivered at Comer Children's in August 2013, but she knew her baby was in good hands.
In the first days of her life, Gundeti performed Cate's first surgery in partnership with orthopaedic surgeon Christopher Sullivan, MD, MPH, who repaired her pelvic bone. Following surgery, Cate was swiftly taken to the neonatal intensive care unit to recover from surgery. After six long weeks at the Ronald McDonald House, the Roches were finally able to take their daughter home.
"When all three of us got home, we finally had our first full day to enjoy Cate and ever since then she's been living wildly," Travis jokes about their active baby. "I think her difficult arrival into the world really shaped her personality. Since she went through all that pain and suffering in the beginning, now she's making up for lost time."
Ten months after her birth and first joint surgery, Cate had a second procedure -- ureteral reimplantation for high-grade vesicoureteral reflux -- to put an end to her frequent urinary tract infections. Despite a second difficult surgery, the little girl had plans of her own.
"After her second surgery, Cate would not stop trying to sit up and wanted to just grab and play," Stephanie said. "I get the impression that her mentality is: 'I'm too busy to let any of this get to me!'"
The Comer Children's experience
Cate celebrated her first birthday in August 2014, and while her journey is not yet over, her early troubles seem like a distant memory in what will surely be a full life for Cate. The Roches believe it was Gundeti, Beverly Dooley, APN, residents and other staff's combined warmth, teamwork and experience that made Cate's success possible.
"Dr. Gundeti was very reassuring from start to finish," Stephanie said. "The first thing he ever said to us, amid our worry and anxiety, was that Cate was going to have a bright future. He focused on her as a person with a future, not a problem to be fixed, since he has seen so many babies go on to lead happy and productive lives. We feel so lucky and blessed that we landed in Dr. Gundeti's hands."
Stephanie and Travis also attribute Cate's lively personality and spunk to the loving and attentive staff during her hospital stay at Comer Children's.
"We're convinced that Cate is always so happy and so friendly because the NICU staff took time out of their busy days to check in on her," Stephanie said. "She is so outgoing and smiley, we just know it's because she was connected to this huge network of supportive and loving people from birth. Beverly and the NICU nurses are unbelievably amazing with Cate, and we couldn’t be the happy family we are without them."