Meagan became a leader in both the intestinal malrotation and short bowel syndrome communities, after navigating her son Camden's complications from intestinal malrotation and volvulus. Camden began vomiting 12 hours after his birth, and was life-flighted to a nearby hospital where he underwent multiple surgeries over the course of three days. He was left with 55 cm of small bowel and no ileocecal valve. Camden has participated in the experimental drug protocol for Omegaven at Boston Children’s Hospital. Meagan has worked in advocacy roles for the rare disease and nutrition support communities (including TPN and Tube Feeding) and offers a personal 1-to-1 approach to help educate families navigating complex medical and gastrointestinal complications. Meagan is a MedGift ambassador, sits on the Boston Children's Hospital's family advisory board and is a clinically certified speech-language pathologist.
Anne Smith became part of the intestinal malrotation community in March 2012, when her three-week-old daughter first showed signs of what was originally thought to be lactose intolerance or a stomach virus. After five days of intermittent bilious vomiting, Mary Brooks Smith was rushed into emergency surgery at Children's Hospital of Greenville Health System with a diagnosis of intestinal malrotation and volvulus. After an initially challenging recovery, Mary Brooks has grown into a thriving kindergartener. Anne and her family of six live in Greenville, South Carolina, where she is a member of the GHS Women's Health advisory board and owns Avery Smith Communications, a public relations firm.
Erin became passionate about intestinal malrotation after her daughter Hazel was diagnosed shortly before her third birthday. Hazel began vomiting bile within hours of her birth, but her pediatrician was unfamiliar with malrotation, and blamed the symptoms on reflux. Hazel continued to vomit episodically and was finally tested for intestinal malrotation at 16 months of age. However, after receiving false negatives on both an upper GI series and ultrasound, Hazel's gastroenterologist misdiagnosed her with cyclic vomiting syndrome. Hazel was treated for CVS until an emergency physician properly diagnosed her with intestinal malrotation and a midgut volvulus nearly two years later. Hazel's surgeon stated that she was likely in a small group of people with intestinal malrotation who were able to suffer from intermittent volvulus. The difficulty in diagnosing Hazel, as well as a lack of knowledge from medical professionals over the years inspired Erin to begin advocating for intestinal malrotation awareness. Erin lives in the New York City area and works in film production.
Jennie became part of the intestinal malrotation and short bowel syndrome communities in March 2015, when her 18-month-old son Brayden had a mid-gut volvulus. Brayden woke up with a stomach ache one morning, his condition deteriorated throughout the day, and by the afternoon he was rushed to the local emergency room. Despite coming in for abdominal pain and vomiting, he was initially diagnosed with diabetes and pneumonia. His condition continued to decline and he was life flighted to a nearby pediatric hospital where further testing was done, eventually leading to exploratory surgery. Surgery revealed that all but a few small pieces of Brayden's bowel had died and Jennie's family was told they should prepare to say goodbye. That night, Brayden's doctor contacted Boston Children's Hospital who said they were willing to try to work with anything. Jennie's family went from being told they would lose Brayden, to having hope. Brayden is currently participating in the Gattex trial at Boston Children's Hospital. By day, Jennie works as a special education teacher and behavioral analyst. She has extensive experience navigating the education system, advocating for children's needs and creating IEPs and 504 plans.
Pavitra became a part of the intestinal malrotation community in 2014 when her newborn son Rohan was diagnosed with malrotation and volvulus. Rohan underwent emergency surgery at Seattle Children’s Hospital and passed away at three days old. Pavitra is passionate about raising awareness for malrotation and, as a scientist, is particularly interested in research relating to malrotation. She imagines a world where there is a prenatal test for this condition so that parents can prepare themselves better. Pavitra lives with her family in Seattle, WA where she works as a computational biologist at the University of Washington and Fred Hutchinson Cancer Research Center. Read Rohan’s full story.
Annie struggled with GI issues for most of her life. In her mid twenties, while on a business trip, Annie was struck with a debilitating episode of vomiting. It lasted for weeks, and eventually lead to numerous diagnostic tests, which all turned up negative. After several months and many repeated tests, Annie's doctors finally caught her intestinal malrotation on a CT scan. Annie had difficulty finding an experienced surgeon willing to treat an adult case of malrotation. After a good deal of searching, she located a surgeon who had performed the Ladd's procedure before. Annie found that rather than alleviate her symptoms, surgery intensified them. As her symptoms worsened, Annie had an nj tube put in, and was told she would never be able to eat normally or have children. Annie continued to struggle for nearly two more years until undergoing a revolutionary new procedure for intestinal malrotation at Cleveland Clinic. This surgery improved Annie's health dramatically, and she recently gave birth to a healthy baby girl.
Mary became part of the intestinal malrotation community when her daughter Mya passed away at one month old due to complications of intestinal malrotation and volvulus. Despite feeding issues beginning the day Mya was born, doctors failed to recognize the signs of intestinal malrotation until it was too late. After losing Mya, Mary decided to turn her pain into perseverance and began advocating for increased awareness for malrotation. She began writing letters, posting petitions, and organized the first Intestinal Malrotation and Volvulus Awareness Day. Mary joined IMF’s team in January of 2019, one year after her daughter Mya was born. As the Director of Bereavements, Mary offers support and encouragement to families who have lost a child due to intestinal malrotation. In addition to raising awareness for intestinal malrotation, Mary works full time, is a mom, and is currently completing her bachelors of business management. Read Mya’s full story.