No Limitations: Vivian’s GI Issues Don’t Slow Her Down Thanks to Complex, Ongoing Care at Oklahoma Children’s Hospital OU Health
When Vivian Bodenhamer was born full-term in 2014, her parents had no idea of the medical journey ahead. At just 6 weeks old, Vivian wasn’t eating like a typical infant. Her mother, Miranda Bodenhamer of Norman, noticed something wasn't right.
"She was vomiting whenever she would eat, like, projectile vomiting," Miranda said. "I would be breastfeeding her, and she would vomit, and it would hit the wall behind me. I had three other kids, three older boys, and none of them did that, so I really knew something was not right.”
After initial tests at a local hospital, Vivian was quickly transferred to Oklahoma Children's Hospital OU Health for more complex tests. Doctors discovered she had a severe urinary tract infection (UTI) and neurogenic bladder, a condition where the bladder doesn't empty properly.
But the vomiting persisted, leading doctors to suspect a bowel obstruction. Her doctors, Dr. M. Adnan Altaf, M.D., FAAP, a pediatric gastroenterologist with Oklahoma Children's Hospital and Chief of the Division of Pediatric Gastroenterology, Hepatology and Nutrition at the University of Oklahoma College of Medicine, and Dr. Jeremy Johnson, M.D., a pediatric surgeon at Oklahoma Children's Hospital and Associate Professor in the Department of Surgery at the OU College of Medicine, found no physical obstruction.
"They were like, ‘She's a medical mystery,'" Miranda said.
Rare Diagnosis: Chronic Intestinal Pseudo-Obstruction
After weeks of testing and observation, Vivian was diagnosed in October 2014 with chronic intestinal pseudo-obstruction. This complex disorder affects the movement of food through the digestive system, mimicking the symptoms of a physical obstruction without any actual blockage. Intestinal pseudo-obstruction presents unique challenges in diagnosis and treatment, as each case can vary significantly.
"Basically, the entire GI tract doesn't work for processing food. Normally, your stomach and intestines squeeze in a coordinated way so that food goes through, and you digest it,” Dr. Johnson said. “But for her, it does not happen, which prevents her from being able to eat."
To ensure Vivian received proper nutrition, her care team at Oklahoma Children's Hospital implemented a crucial intervention.
"The only way for her to grow and get nutrition was IV nutrition, so she had to have a special catheter placed to receive IV nutrition at home," Dr. Johnson said.
This method of nutrition has been a constant in Vivian's life since infancy. Over the years, Vivian's case required multiple interventions and careful management. In January 2023, Vivian's condition worsened, and she underwent a significant surgical intervention in the form of a diverting ileostomy.
"Think of the intestines as like a garden hose that goes from one end to the other,” said Dr. Johnson. “When you make an ostomy, you cut that garden hose in half and bring the end that water is flowing through – in this case, it's waste – up to the skin, through the abdominal wall. The bag is just there to catch it, so you don't make a mess."
Four days after the surgery, however, Vivian’s bowel perforated, and she went septic.
Dr. Johnson came in on his weekend off to do the surgery. She stayed for three weeks in the ICU while her health team remained unwaveringly involved in her recovery.
"The ICU doctors were amazing. Dr. Johnson would come by and check on us as did Dr. Atlaf and everybody," Miranda said.
Despite these challenges, Vivian approaches life with remarkable spirit.
"She's just your typical 10-year-old," Miranda said. "She does ballet, and she does virtual school. She has three older brothers and gives them heck."
Vivian refers to her medical devices as her "accessories," and her resilience allows her and her family to enjoy life, even taking a cruise to Honduras and Mexico recently. Her vivacious nature impresses her doctors as well.
The Importance of Specialized Care
Dr. Atlaf emphasizes the unique nature of Vivian's case, noting that the complexity of her condition requires constant reevaluation and personalized care. While Vivian's condition presents ongoing challenges, her family remains hopeful.
"It's a multidisciplinary disorder that needs multidisciplinary management with the involvement of various specialists, including surgeons, urologists, radiologists, and GI specialists,” said Dr. Atlaf. “Oklahoma Children's Hospital stands out as one of the few centers equipped to handle such complex cases.”
For now, Vivian continues to thrive with the support of her family and the Oklahoma Children’s Hospital team.
"She's spunky and spicy and sassy," Miranda says proudly. "If you saw her on the street, you wouldn't know anything was wrong with her."
From specialized GI care to dedicated ICU teams, Oklahoma Children’s Hospital handles complex, long-term pediatric cases with expertise and compassion. For the Bodenhamer family, the short 30-minute drive from Norman made seeing the specialists even easier.
"Everybody at Children's is so amazing," Miranda said. "When you're there for six weeks, you get to know the nurses, and you develop relationships that are just super special. One of the nurses even named her new baby Viviana after Vivian. You just get so close to all the doctors and nurses at Oklahoma Children’s Hospital."
Learn more about comprehensive, multidisciplinary pediatric care at Oklahoma Children’s Hospital OU Health or speak to an expert by calling (405) 271-4700.
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