Stories
From ShortGut - Wiki
Please share your experiences here -- easiest way to add a new page is just to edit this page with the new link (follow existing examples) and then save it -- then you can just click on that link to make the new page. You can share as much information and pictures as you want (this can serve as a blog or carepage), and provide links to your http://www.carepages.com or other resources. Also see Blogs for external web logs and Omegaven#Personal_Stories.
- Tajah Mae Romine was born May 2007(2 mos early) with losing over 95% of her small intestine and being diagnosed with short bowel syndrome. She has approximatly 6cm of small intestine remaining. She has been on TPN and Lipids since June and hopes to be on Omegaven soon (waiting on FDA and insurance approval). www.carepages.com page name: Tajah Mae
- MaxMunakata (born 5/28/06) -- infant with long segment Hirschsprungs, treated by Dr. Soden at Children's Denver after starting on Omegaven with Dr. Puder at http://www.childrenshospital.org Boston. His updates can be read at http://psych.colorado.edu/~oreilly/max/max.html.
- AustinRath -- Austin was born 5/23/06, with ultra long segment Hirschsprung's Disease. He has 27-30 cm. of small intestine remaining. His non-functioning small intestine and entire large intestine have been removed. He is TPN (12 hrs overnigth) and g-tube feeds (12 hrs. over night), and replacement fluids during the day. He eats table food during the day. He has a permanent ostomy. He is treated at Boston Children's Hospital. He is on traditional TPN and tolerating it so far. www.carepages.com page name: Austinrath
- Patrick 14 year old with Nearly total Intestinal Hirschsprung Disease and Eosinophilic gastro enteritis. On TPN since birth and as of now with almost normal liver functions. Is on mucomyst to keep liver healthy. Treated at Sickkids Hospital Toronto Canada
- Ellie Brogan --Born April 2006 with Jejunal Atresia. She was born with only 30-40cm of small bowel and 70% of large bowel. On TPN since birth and Omegaven since 1 month of age. Feeds mostly by g-tube but would prefer her Elecare in a sippy cup if her intestines could handle it. She also eats 3-4 meals a day of baby food and solid food. Has CVL, G-tube and jejunostomy. Currently she is an outpatient of Dr. Jennings and the Short Bowel Clinic at Children's Hospital Boston. See how she is doing at http://www.Eleanorbrogan.blogspot.com
- Nora Thomas - Nora was born April 2007 with several kinks in her small intestine which resulted in her losing over 95% of her small intestine and being diagnosed with short bowel syndrome. She has approximatly 4cm of small intestine remaining. She has been on TPN since birth and hopes to be on Omegaven soon (waiting on FDA approval). At a bit over a month old Nora feeds mostly by G-tube and we have been trying a few bottles each day with limited success. You can learn more about Nora and see how she is doing at http://www.norathomas.com
- Connor Maruska - Born January 4th, 2007 in Arizona. Connor was born with Apgar scores of 8 and 9. After his first feeding he threw up bright, neon green bile. It was quickly determined that a malrotation during development lead to a midgut volvulus (a kink in his intestine). Emergency surgery was performed 12 hours after birth to save his life. Subsequent surgeries left Connor with 46 cm of small intestine. At six months old Connor traveled to Boston to go on Omegaven which saved his liver. Read more about Connor at http://www.connorcharles.com.
- John Ballard - Born January 9th, 2007. John was born at 27wks (3 months early). After developing a Volvulus when he was 3mos old, he lost 60cm of small bowel, leaving him with 48cm and his ilealcecal valve. He has developed complete thrombosis of his portal vein and has been on TPN since birth. Since receiving his first dose of Omegaven in Oct of 2007, in Louisville,Kentucky, his liver enzymes have decreased by 90%.website is http://www.caringbridge.org/visit/johnballard1
- Abigail Uren - Abby was born on April 28, 2006. She developed Necrotizing Enterocolitis at a week old. She has 50-60cm of small intestine and her sigmoid/rectum left. We're are currently trying to get Omegaven at Children's Hospital in Milwaukee WI but are running into some road blocks. Her website is [[1]]
- Bo Tsuen Bernabe Velarde-Chan (born 6/3/07) -- with the congenital rare condition, Microvillous Inclusion Disease. He is functionally a Short Gut kid, and TPN dependent (18hrs). As of November 20th, he is the first child in Michigan to receive Omegaven. DeVos Children's Hospital went the extra mile, where The University of Michigan could not be bothered with "the paperwork." Thank you, DeVos! This is Bo's Blog [[2]]
- Ella Cumicek- Ella was born March 21, 2007 in Green Bay, WI. She developed Necrotizing Enterocolitis at 2 months old, only a week before she was scheduled to leave the NICU. Ella has 30cm of small intestine. We spent approximatley 3 months at Children's Hospital in Boston on the Omegaven treatment. Her bilirubin level was as high as 14.9 and after 3 months is now under 1.0. Thank you Dr. Puder, Kathy & Jill! Ella's Caringbridge Website is [[3]]
- Logan Martin- Born 4/24/86 in Salida, CO. SBS due to obstruction at birth. I was on TPN until 9th grade--lots of infections for a while, but things really started looking up through high school. Down to two tube feedings of Tolerex per day. Now an avid runner and swimmer and debater for the University of Denver. Law school bound in '08!
