Stories

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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

  • My son Matthew is now 15 months old. My husband and I are military and had our son overseas in England. The day after he was born he still hadn't had any bowel movement, and when he threw up green bile I knew something was very wrong. The Drs. did an x-ray and thought it was a simple blockage so they moved us off-base to caimbridge hospital. That night when Matty was not even 48hrs old, he had his first of over 10 surgeries. They gave Matt an ostomy and told us he should be fine in a few days. We were really hoping to be home by the weekend. It was a few days after that when there were no positive results and they started biopsys. I didn't still didn't understand at the point, this was a small complication, why isn't he coming home yet? The Drs. sat us down, and this was the first time in my life I'd ever heard the words "hirschsprungs disease." I was fresh in the military, in a country i'd never been to, far from home and any family I had; I was a new mom and my little baby had complications I'd never even heard of. We were scared, there was nothing else to do but pray and be together as a family. My son ended up with only 32cm of small bowel that had cells, no colon, no large intestine at all. They told us matt would be in the hospital for at least a year, and all I could think about was wanting to be home. The military said they could relocate us because of his condition! My husband and I did research online for the best hospitals close to military installations and asked them to send us to Boston so Matthew could go to the Children's hospital. We had 7 days to pack up our lives and take a med flight to Boston. I felt so relieved we were back home in American and in the best hospital for his condition, with his amazing surgeon Dr. Puder. I wanted Matthew on omegaven, but he was lucky enough not to qualify for it for having such a good liver. Matthew was home with us by the time he was 3 months old. A few surgeries and line infections later, Matt is doing great. I am in AWE of the Doctors, nurses, and support teams who give these children almost normal lives! This is really the first time I've shared information (read stories) about people going through the same thing. I used to think I was too busy for outreach, but when I read the "funny stories", I laughed and cried...it's so good to know that there are others who know what your going through, and know the pains and get to experience the special joys that come with these children!
  • Aron Eðvarð was born Oktober 11, 2008 at 35 weeks gestational age. A large part of his intestines were outside of his stomach when he was in the womb(gastroshisis) but when I was 24-28 weeks pregnant his stomach closed so the outside intestines all damaged. He has 40 cm of small intestine remaining, not his ilealcecal valve. He also lost half of his colon. His small intestines is very dilalted and his colon is much smaller than his small intestine. He spent the first 7 months of his life living at the childrens hospital in Iceland. He is on TPN 18 hours per day and Omegaven 15 hours. Since he started Omegaven in January his bilirubin level has dropped and it's now normal!. He has an ostomy. He also has gastrostomy and gets Neocate 24 hours, we are currently at 22 ml per hours, the goal is 37. He hasn't got anything to drink yet but hopfully that day will come sooner than later. www.nino.is/litlabumbugull
  • Blaise Ursula Conwell Balas was born on January 1st, 2009 at 33 weeks gestational age. Blaise had a mid-gut volvulus, leaving her with approximately 20cm of small intestine. We're still waiting to hear the status of her large intestine as she continues her recovery from the initial surgery. She's currently receiving care at Children's Hospital Boston. You can find Blaise's blog at http://littleblaise.blogspot.com.
  • Faith Marie Kufeke was born November 13, 2008 at 38 weeks with gastroschisis. Her exposed small intestine was very dilated and matted together, and had a peel on it when she was born. She has functional short-gut, having only lost about 5 cm of intestine during a tapering enteroplasty surgery to correct 12 cm of dilation in her jejunum. She's had many struggles along the way, spending the first 127 days of her life in the NICU at Denver Children's, before being released to travel to Boston for Omegaven under the care of Dr. Puder. We are currently still in Boston, waiting for Faith's bili levels to normalize enough to go home to Colorado, where we will be seen by Dr. Soden at Denver Children's, but Faith's care will still be led by Dr. Puder here in Boston. Faith's story is on her blog: http://www.faiths-place-08.blogspot.com
  • 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
  • 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 (13 hrs overnigth) and g-tube feeds (12 hrs. over night), and 4 hours of replacement fluids during the day. He eats table food during the day. He has a permanent ostomy. We are from Pittsburgh, PA, but have been to Boston and Cincinnati; now he's being treated at Pittsburgh Children's again. 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. JOhn received his first dose of Omegaven in Oct of 2007, in Louisville,Kentucky. John's liver enzymes normalized after 7mos on Omegaven, he received his last bag of TPN and Omegaven on June 5th, 2008!!!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]]
  • Ryan Nagy - Born October 2006 at 27wks.  Lost all but 29cm of small intestine, 1/4 of colon including ICV to NEC.  Bianchi procedure Feb 2007, gained approx 82cm.  On Omegaven.  Currently weaned to 3 nights of TPN.                                     G-tube fed exclusively (for now!)www.caringbridge.org/visit/ryannagy
  • 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!
  • Jenna - Born January 2006.  Jenna was born with a triple jejunal atresia that left her with approximately 50% of her small bowel.  Her condition is complicated by Chronic Lung Disease which developed during her 3 months in NICU.  She came off TPN before discharge from NICU, and came home with an NJ tube.  She underwent surgery at 5 months for g-tube placement.  Jenna still feeds almost exclusively by g-tube, but does love popcorn and fruit smoothies.  Her primary care for SBS is with Dr. Duggan and Dr. Jaksic at Children's Boston.  Read more at: http://psychmamma.wordpress.com
  • Ray Richardson. I have been trying to research various medical conditions over the internet to gain knowledge about a possible condition before I go and visit a doctor and pay an enormous fee ( i do not have health insurance). I need any help that you could offer in trying to help me narrow what I could possibly have. Let me say first that I am 19 years old, having gas, belching, abdominal pain and cramps. All of this occurs on an empty stomach, and when I eat something the pain and discomfort immediately go away. This leads to me believe that this is not something so simple as food allergies. I have tried Prilosec with no help, so this leads me to think that I do not have a stomach acid problem either. So what the heck could this be? I was tested for major gastrointestinal diseases I think a few years ago, though the doctor did not do a stool sample I believe, and I think that this is very important in trying to rule things out here. Am I right with that? And I have never had any colonoscopys, endoscopys done etc. But here is some other information about me that may help you help me figure this out. When I was 14, I was diagnosed with osteoporosis. Yes, at 14 and the doctor could not tell me why. The condition does not run in my family, I mean only 1 person I know in my family has it and that is my grandmother. But she got this when she was in her 80s and I was 14. Premature osteoporosis is very rare. My mother thought that I had a malabsorption problem so I had my blood tested, and the test came back fine. However, I read that the proper way to test for malabsorption is to do a stool sample to find excess fat present. Am I right with this also? I think these doctors were very negligent and incompetent IMO. So, given my age and working with home buying tips I dont believe that my osteoporosis is genetic, and I do not know about the malabsorption, but I am not extremely thin and this is very common with malabsorption and I do not have chronic diarrhea either which I think is also related. Heres another bit, I have had severe acne since I was 11 or 12. I have tried everything from prescription topicals, OTC products, antibiotics, light therapies, and even accutane. Accutane was the only thing that actually gave some relief, but even after a second course I am still not completely clear. I have had the stomach problems all my life, not being able to digest breast milk I was given goat milk instead as a baby. Another thing (if related), but I had pre pubescent puberty at the age of 7, not my period but just the normal hair growth. Dont know if that is related to all of this though, because I know that different girls develop at different ages. Please take all of this info into account and try to help me figure out what the possibility of all of this is! I do know that alot of malfunctions of the body are diagnosed and treated as a symptom would be treated, not adressing the underlying cause. For example, rhheumatoid arthritis would be treated with painkillers, diabetes with metformin or insulin, etc. But these diseases are part of a bigger picture, autoimmunity. Am i right? So instead of treating my osteoporosis with calcium, my acne with pimple creams, and my gas with Beano, can someone see the bigger picture here? I do believe there is one and I am determined to find it out. If anyone is familiar with disorders of the endocrine system, please inform me if all of these possible "sub-disorders" are part of that bigger picture. I have done a little research on Cushings syndrome and that seems like a possibility. what is your opinion guys?
  • Aidyn Stephany Aidyn was born on April 14, 2009 at 34 weeks gestational age, in Mesa, Arizona. He had apgar scores of 8 and 9, and was expected to go home in a week or two, depending on weight gain. On the third day of life, Aidyn became ill with NEC (necrotizing enterocolitis) and subsequently had 90% of his small intestine removed, along with his ileocecal valve, cecum, appendix and up to 25% of his large bowel. The resections happened in less than 24 hours of NEC symptoms. He was given a central line and ostomy. At six weeks old, Aidyn started receiving Omegaven at Children's Hospital Boston, as he started to show signs of liver damage already. His highest total bilirubin was 9.9 and direct was 6.8. After two months in Boston, he finally came back home to Arizona. At 5 months of age he had what was left of his small and large bowels reconnected, and continued with drinking small amounts by mouth and receiving most of his nutrition with TPN/Omegaven. At 22 mnths old, Aidyn has come full circle, thanks to Dr. Puder and the CAIR team at Children's Hospital Boston. He just had the go ahead by the team to stop all TPN/Omegaven and IV fluids (he had been weaning all this time and eating a variety of foods and drinking oral hydration solutions). All of the details of his progress has been put in a blog: http://aidynstephany.blogspot.com/ Updated 2/18/2011.


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