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At their 22-week prenatal appointment, one Texas couple got a startling surprise— their doctor couldn’t find their baby’s bladder in a sonogram. The next week, they learned she had a rare congenital defect, bladder exstrophy (BE), where the bladder wall is improperly formed and is exposed outside the body. BE occurs in about 1 in 40,000 babies.
Jordan and Jeff Wonsmos of Dallas, had never heard of BE, but, by coincidence, Texas Children’s Hospital in Houston— where Jordan’s brother-in-law is the director of surgical services— had just recruited Dr. Patricio Gargollo, one of the nation’s foremost experts on bladder exstrophy repair.
Within 48 hours of their baby’s diagnosis the couple met with Gargollo, who advised them on next steps. Since the BE was found before birth they had time to prepare, whereas some families end up airlifting their newborns to specialists because the condition is so rare, their doctors hadn’t ever seen it before.
“We really had God in our lives touching us throughout. I knew in that moment we were being watched over,” Jeff, 36, who works in financial consulting, told FoxNews.com.
While the condition can be missed and only discovered at birth, it doesn’t necessarily mean a negative outcome.
“The vast majority of these babies are totally normal babies who just happen to have an abnormality of the urinary tract that has to be dealt with. It’s very fixable,” Gargollo told FoxNews.com.
Baby Lila was born on June 20, 2014. Because her sensitive bladder tissue was exposed, Gargollo recommended an usual solution to avoid rubbing from diapers— saran wrap.
“It keeps the area very clean and scrape free,” he said.
Four days later, the couple drove to Texas Children’s, where Gargollo performed the three-part surgery. First, Lila’s bladder and genitalia were reshaped. Then, her pubic bones were split to replace the bladder in the body. Finally, the pubic bone was fused so the bladder and reproductive organs were attached and closed.
“The easiest way to picture it is like an open book; the bladder is the pages. To close that book up so you don’t see the pages, you sew it back together and put all the muscle and skin on top of that. The backbone of the book is the pelvic bone,” Gargollo said.
Following Lila’s surgery, the nurses allowed Jordan and Jeff to care for her in recovery, preparing them for life back home by giving her sponge baths and singing her lullabies.
“The nurses in the NICU encourage parents to take a hands-on role in the baby’s care. As a mother, that’s huge because you do feel helpless when your baby is in the incubator,” Jordan, 33, told FoxNews.com.
Her first five weeks at home, Lila had a cast from her hips to her ankles, which were attached together to help her pubic bone heal. Now that Lila has had the initial repair and is healing well, she may face additional surgeries, but all that depends on her growth.
For babies with BE, the health of their kidneys is the biggest concern. The bladder normally fills with urine and empties, but for BE patients, the urine sometimes won’t cycle or refluxes into the kidney, which could lead to kidney infections and ultimately, irreversible kidney damage. Because it’s a chronic condition, Lila will have to be monitored long-term.
Urinary continence and control is another issue parents of BE babies must manage as they potty train and grow into adolescence and adulthood.
“If you think about urinary control, babies learn how to walk, talk, run, jump, and sing before they learn how to be continent; it’s a very, very complicated set of events that need to happen for a normal child to achieve continence,” Gargollo said. “You unfortunately don’t know until the child is closer to age 3 or 4 when you have better communication.”
As long as the kidneys are healthy, everything else is fixable, Gargollo noted. Patients may need further surgery to achieve continence, or may need alternative solutions such as intermittent catheterization, to empty their bladders. So far, Lila is recovering well and has healthy kidney function.
Jordan and Jeff met when she was the volunteer coordinator with the Make-a-Wish Foundation of North Texas and he was an event volunteer. Granting wishes for local families brought them together— and continues to remind them how lucky they are that Lila has a fixable condition, Jordan said.
“The greatest thing about it— obviously it’s very rare and she’ll deal with it her whole life— is it’s fixable. That was really the optimism we had to keep the whole time,” Jeff said.
The couple, who also have a son William, 4, found a support group on Facebook of families with BE, which has helped them learn both the struggles of fellow parents, but also the success stories of adults living with BE.
“It’s also kind of a private condition, not something in conversation that might come up like diabetes. This Facebook group has been a real blessing to me,” the stay-at-home mom said. “It’s heartbreaking, this continence issue… things like not wanting to go to slumber parties. We certainly pray that Lila’s surgery was a full fix and down the road she won’t face those issues.”
“We really prayed if God was giving us this daughter with this special circumstance, that he had a plan to use us and provide hope and touch another family,” Jordan said.