Patient Stories | Campbell and Cloacal Exstrophy

Campbell Comes to Cincinnati Children’s for Cloacal Exstrophy Surgery and Expert Treatment

There are many ways to measure the passage of time. The sun creates days, seasons, and years. The moon tracks months that can be counted by its phases as easily as calendar pages.  

But Cassie Lester prefers to live each day one minute at a time. It became the new normal a little over three years ago, after she and her husband, Christopher, received a grim diagnosis during her 20-week ultrasound.

Their baby boy was diagnosed with cloacal exstrophy, or OEIS (omphalocele-exstrophy-imperforate anus-spinal defects) syndrome, a complex condition in which part of the abdomen is open and organs are visible on the outside of the body after birth. Their doctors in southern Kentucky believed nothing good would come from the pregnancy, predicting that the child, once born, would face a gauntlet of challenges and complicated surgical procedures.

Seeking a brighter hope for their baby’s future, the Lesters travelled north to Lexington for a second opinion and were soon transferred to Cincinnati Children’s to meet with experts in the Fetal Care Center and the Colorectal Center.

“You get to a point where you think, ‘Ok, I’ll take this one day at a time,’” said Cassie. “And then I had to literally think to myself, ‘I’m gonna take this one minute at a time.’ Because there were times when I couldn’t breathe.” 

Breathing, though, came easier once they arrived at Cincinnati Children’s, as doctors and staff conducted tests, collected images, and provided Cassie and Christopher with facts, information and, most importantly, a path forward.

“They gave us options. They didn’t just come in and say, ‘I don’t see anything good coming of this pregnancy,’” said Cassie. “Cincinnati [Children’s] laid everything on the line. We had imaging done and all kinds of testing. They presented the facts, but in a caring way.” 

Campbell is Born, Multiple Surgeries Follow

Cassie clearly recalls that day in January 2021, as Campbell’s Cincinnati Children’s care team stood waiting as she went into delivery at the Fetal Care Center Special Delivery Unit, one of the only birthing centers located inside a pediatric hospital. Immediately after Campbell was born, he was treated by a team of experts, with surgeries beginning the next day in the hybrid operating room, including operations on part of his colon and on his bladder, which was located on the outside of his body. 

Campbell’s extensive care team included Beth Rymeski, DO, a pediatric surgeon and associate surgical director for the Fetal Care Center. She performed an exploratory laparotomy to examine Campbell’s abdominal organs, as well as a successful omphalocele closure.  

"Specific for this diagnosis, we have a team of pediatric colorectal surgeons, urologists and gynecologists who specialize in the care of these complex patients," she said, describing the collaborative team approach to patient care. 

Ostomy surgery was also necessary soon after he was born to create an opening in the abdomen, altering the way waste exited Campbell’s body.  

“Basically, they reconstructed the lower extremities of his body that didn’t develop properly,” Cassie explained. 

In addition to cloacal exstrophy, Campbell was born with spina bifida, a condition that occurs when the bones in a baby’s spine don’t fully form early in the pregnancy. This required an entirely different set of surgeries and treatment. 

When Campbell was 2 weeks old, pediatric neurosurgeon Jesse Skoch, MD, performed a tethered spinal cord release surgery. Two years later, Dr. Skoch performed a re-resection and a shunt placement in Campbell’s back. 

Surrounded by Experts, Mom and Dad Become Part of the Team

It’s normal for parents to worry whenever their child requires complex care and surgery, but Cassie and Christopher said they felt confident in the abilities of Campbell’s care and surgical teams. They also felt like they were members of the team.

Making sure parents feel comfortable and informed is a top priority, said Dr. Rymeski. 

“We like to give the families as much information as possible without overwhelming them. Each child’s anatomy is different, and we can’t always tell the specifics prenatally. So, when I counsel families, I go over the full range of possibilities.” 

Ashlee Bolger, MD, is pediatric rehabilitation physician who worked regularly with Campbell during his time in the Spina Bifida Center. Given the rarity of Campbell’s condition, there aren’t many benchmarks for measuring his progress, but Dr. Bolger said Campbell is right where she would expect him to be based on the level of his spinal cord malformation, and the fact he had orthopedic surgery months earlier to help with foot position.

“He is cruising on furniture and walking with a walker when he wants to, which is a step in the right direction,” said Dr. Bolger, noting it’s difficult to predict the extent of eventual leg function given so many variables. 

“I want all my patients to be doing the things they love and participating in life. It doesn’t matter to me whether he walks independently, uses a walker, or uses a wheelchair.  My goal is to support him and meet him where he is at in the moment. Every patient is unique.”

Hope for the Future

Campbell recently celebrated his third birthday. As he continues to make progress back home, Cassie is grateful for all the care they’ve received at Cincinnati Children’s. She also hopes other parents in similar situations will find hope in Campbell’s journey.  

“I know the hopelessness that they're probably feeling when they get this diagnosis. My husband and I felt that too, but there's definitely hope,” she said. “Sometimes you just have to take it one minute at a time. You can't even take one day at a time. But don't ever give up." 

(Published January 2024)