Reconstructive Pelvic Medicine Program Changes Brothers’ Lives

Brothers Zeke (left) and Isaiah (right) were both born with a rare condition. They received care from Seattle Children’s Reconstructive Pelvic Medicine Program.

Ezekiel, or “Zeke,” 7, and Isaiah, 5, had a life-threatening medical condition at birth. They were both adopted from China with anorectal malformations, which affect about 1 in every 5,000 babies. Babies born with these malformations have no opening at the end of the digestive tract where the anus normally is, requiring complex surgery.

After receiving emergency surgery in China, both received individualized follow-up treatments from Seattle Children’s Reconstructive Pelvic Medicine Program, which is the most comprehensive and experienced program of its kind in the Western U.S. The program brings together the knowledge and skills of experts from General Surgery, Gastroenterology, Motility, Gynecology, Urology, Radiology and Pathology.

“Seattle Children’s has been fantastic, and everyone that we have come across has been great,” said mother Robyn Ross. “Everyone even knew us by name, and they made the whole experience very easy to navigate.”

A rare condition

Zeke after his surgery in 2014.

Anorectal malformations are often associated with VACTERL abnormalities, which include vertebral, cardiac, renal and esophageal abnormalities. Babies need surgery, which corrects the malformation so stool can leave their body properly, and regular follow-up visits.

“Many surgeons can do an operation to make anorectal malformations survivable, but only a handful of centers of excellence in this country manage the condition optimally for socialization,” said surgical nurse practitioner Jennifer Kreiss, who was involved in Zeke and Isaiah’s care. “Bowel management gives kids the freedom to be socially continent, so they can spend less energy worrying about having an accident and more time playing and learning.”

Robyn and Randy Ross adopted Zeke in 2013. In their adoption paperwork, the Rosses had included “gastrointestinal issues” in the list of medical conditions they were capable of caring for. Hours later, the adoption agency had Zeke’s file for them to look at. The file said he was born with anal atresia.

“We had done research about what the condition looks like,” Robyn Ross said. “But we had no clue what we were walking into when it came to the day-to-day.”

After adopting Zeke, they were referred to Seattle Children’s. He had surgery to increase the size of his anal opening in spring 2014. At age 3, Zeke was one of the youngest children to go through the Bowel Management Week program.

One year later, the Rosses were not planning to adopt again. However, they changed their minds after seeing Isaiah in an email from the adoption agency.

“Isaiah chose us,” Ross said. “That’s just how it worked.”

When adopting Isaiah in 2015, the Rosses felt prepared to deal with Isaiah’s different malformation case.

“His needs were a little more extreme because he required a complete reconstruction, but we knew what we were walking into this time,” Ross said.

Isaiah’s anal opening was attached to the urethra, requiring a full reconstructive surgery. In January 2016, he underwent surgery to move the opening. In 2017, Isaiah had tethered spinal cord release surgery, so that his spinal cord could move freely inside his spinal canal. He had no complications.

“He got to watch as much TV as he wanted, so he was in heaven,” Ross said. “We haven’t had any medical difficulties for him post-surgery. It’s been fair sailing.”

Treatments transform brothers’ lives

After their successful surgeries and follow-up care at Seattle Children’s, the brothers’ quality of life has vastly improved.

Zeke and Isaiah enjoy riding bikes, playing soccer and hockey in the backyard, taking family hikes and reading.

“They both absolutely love books,” Ross said. “Isaiah will stick himself in a corner with a pile of books and a blanket. Zeke will sometimes grab a book and ask to read it aloud to Isaiah.”

The two boys’ distinct personalities balance each other out, Ross said. Zeke is the detail-oriented, analytical child, while Isaiah is the comedian of the family, with a flair for the dramatic.

“We call Zeke the engineer,” Ross said. “He is the Lego fanatic in our family. Isaiah is always laughing or trying to make people laugh. They’re characters.”

Zeke finished first grade this year. He has a backpack of supplies at school in case of an accident, and his teachers have been supportive of his condition. Isaiah will begin kindergarten in the fall, and will have his own backpack in the nurse’s office.

When Isaiah has questions about managing his condition, Zeke is quick to offer answers.

“Having two sons with the same issues has been helpful for them,” Ross said. “They can bond with each other over their daily routines and know what the other is going through.”

Ross said it’s incredible to see how far they have come.

“They’re super healthy, happy little kiddos,” Ross said. “They are doing so well. The thing that makes us teary-eyed is that neither one of them could be alive. Their condition was life threatening at birth, and we’re so glad we were able to get them the medical care that they needed.”

When it comes to their care team, seeing them succeed is what their work is all about.

“It means the world to me that Zeke and Isaiah are doing well. With some regular management of their condition, they are able to go to school, play sports and just be regular kids,” said Dr. Jeffrey Avansino, vice president and medical director of Surgical Services and director of the Reconstructive Pelvic Medicine Program at Seattle Children’s, who was involved in Zeke and Isaiah’s care. “When you have the opportunity to change someone’s life, that is incredibly gratifying. Zeke and Isaiah have amazing parents, and I believe they will grow up to live fulfilling lives.”