Danielle is 35-years-old and was born with intestinal malrotation. She presented with symptoms at birth (1988) which consisted of extreme abdominal pain (relief only after a bowel movement), vomiting, dark/bloody stools, white stools, diarrhea, reflux, and abdominal distension. She spent most of her childhood in emergency rooms due to the lack of knowledge and awareness of intestinal malrotation and the symptoms that came with it. Originally, she was thought to have abdominal migraines, lactose intolerance, or anxiety induced stomach aches. Her malrotation wasn’t found until she was 10 years old in 1999. It was discovered at Children’s Hospital in Seattle Washington, during a swallowing study- when a doctor happened to walk past the room during the study and by chance happened to glance at the screen. He made sure to inform her team that the issues were being caused because she had intestinal malrotation (At the time, they had just assumed the imaging was backwards.). This doctor instantly became her lead care provider and she was rushed back for emergency surgery for possible bowel obstruction. The surgery lasted 16 hours, and during surgery it was found that she was partially malrotated with volvulus. In addition, she was born without an appendix. Danielle had to have several feet of intestines removed due to volvulus. Recovery was roughly a week long, but life didn’t change as she expected it to.

Since the surgery in 1999, Danielle has struggled with ongoing issues; extreme abdominal pain with no specified cause, pain resulting from adhesions and scarring, IBS, bowel issues, multiple bowel obstruction scares, food avoidance due to the pain and need to use the restroom if not immediately within 15-30 minutes of consuming food, stomach aches brought on when she is anxious, scared or nervous, and random bouts of nausea and vomiting. Her heart is found to be on the correct side of my body but her heart itself is turned; She also has Azygos continuation of IVC to right superior vena cava. It was found in her early twenties that she had grown an additional spleen post 1999 malrotation surgery, diagnosing her with Polysplenia. She was diagnosed with IBS around the same time as her malrotation, her gallbladder was removed in 2022 due to symptoms that had brought her to the ER for yet again possibility of bowel obstruction. It was later found after examining her gallbladder, that it wasn’t functioning properly and had begun to atrophy.

When she was a child and up until current day, she has always been pushed from one doctor to another due to “being to medically complicated”, “the labs are good and the ladds surgery was successful, there’s nothing more that can be done” is often what she has been told or she is just passed on to another doctor. She hasn’t found a doctor that is willing to investigate her diagnoses and current challenges, to the point of giving up on finding care and seeking resources. Danielle shared that the lack of knowledge in general regarding IM and access to current knowledge and resources is beyond sparse. If she wasn’t employed at OU Health Sciences, within the Biostatistics and Epidemiology Department she wouldn’t have known of IMPOWER or the Intestinal Malrotation Foundation, and the research and resources that have come about through the Foundation. Danielle is thrilled to have found the IM community and is committed to the education, resources, community and to bring hope to current and future diagnosed patients and their families. Danielle expressed a sincere thank you ‘for the work and awareness you are bringing to intestinal malrotation, you are truly saving lives and giving meaning back to people and families affected, many who have lost hope (Me included).’