Layden was diagnosed before birth with bladder exstrophy and underwent surgery to fix the condition just seven days after he was born. But it wasn’t until he was nearly 2 years old that his family found Children’s Hospital of Philadelphia and the complex condition was successfully repaired.

Just seven days after Layden was born at a hospital near his home, he underwent his first surgery to repair bladder exstrophy, a complex, rare disorder that occurs early on while a fetus is developing in the womb. Layden’s condition had been diagnosed before he was born, during his mother Prudensia’s 20-week pregnancy ultrasound.

His abdominal wall hadn’t fully formed, leaving the pubic bones separated and the bladder exposed to the outside skin surface through an opening in the lower abdominal wall. Because the bladder and urethra were not closed, the bladder couldn’t store urine. Urine produced by the kidneys drained into this open area.

Unfortunately, Layden developed a severe bone infection after the surgery. The pins that his surgeons had put in place to close the opening in his abdominal wall had to be removed, leaving his bladder exposed again. He needed to receive antibiotics through a PICC line for six weeks and a type of therapy known as a wound VAC (vacuum-assisted closure of the wound) to heal the infection.  

Searching for a team skilled in surgical repair of bladder exstrophy

When Layden’s family moved to Delaware, they sought care at Children’s Hospital of Philadelphia (CHOP). From Layden’s first appointment with Douglas Canning, MD, Chief of CHOP’s Division of Urology, Prudensia knew he was in good hands.

“From day one, Dr. Canning showed compassion, knew what he was doing and had a plan for Layden,” she says.

In 2013, Dr. Canning helped form the Multi-Institutional Bladder Exstrophy Consortium (MIBEC), which is comprised of expert pediatric urologists from CHOP, Boston Children's Hospital and Children's Hospital of Wisconsin. The goal of this multicenter team is to provide expert surgical care of babies born with bladder exstrophy.

After evaluating Layden, Dr. Canning and the MIBEC team spoke with Prudensia about their plan for the bladder exstrophy repair. Layden’s surgical team would include pediatric urologists from MIBEC’s three-hospital team as well as CHOP orthopedic surgeon, David Horn, MD. They would move his bladder inside his body and close the abdomen and pelvic bones during the same operation.

“I was happy with everything knowing that Layden was getting this special, extra level of care,” says Prudensia of MIBEC’s collaborative approach.

The 14-hour surgery was a success. Layden spent the next few weeks in the hospital in traction and healed well. After discharge from the hospital, he began physical therapy (PT) and was walking again just a month later.

Long-term care to improve urinary control and appearance

Layden, now 9, returns to CHOP every year for follow-up visits and ultrasounds to ensure his bladder and kidneys continue to develop in a healthy and safe way. He’s gotten better at knowing when he needs to go to the bathroom, but his bladder is still small, making it hard for him to hold it for too long.

He continues to wear a diaper and has been doing pelvic floor therapy, in addition to PT, to strengthen his pelvic muscles to improve his urinary control. Layden will undergo testing next summer to evaluate his bladder neck to assess whether additional surgery to provide better urinary continence is needed. Dr. Canning is optimistic, though, that Layden will gain continence with time as his bladder grows. When Layden is a teenager, he will also undergo surgery to complete the genital reconstruction from an appearance standpoint.

Other than his bladder issues, Layden is doing great, says his mom. He’s a very active kid who loves karate and hiking.

“He doesn’t let anything stop him,” says his mom. “He’s getting more and more confident and realizing that [bladder exstrophy isn’t] stopping him from doing anything.”

“Dr. Canning really cares about his patients,” she adds. “I’m glad I found him. I’m very happy with how much he cares. It’s the best care that I can ask for.”