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  • By Meghan Hall
    Dec 23, 2013
    (RESPONSE TO BELOW) The introduction was written by our Medical Liaison and reviewed by top gastroschisis researchers in the country so the information is accurate. Often, when research comes out, it is not often disseminated rapidly which is why we exist at Avery’s Angels though, to support families and create a bridge between researchers, medical professionals, and patients. Gastroschisis is known to be epigenetic, and multiple studies have shown that there is a familial component. A google search will show a 1993 article published in the American Journal of Medical Genetics which concluded “pregnancies occurring in a family with a history of gastroschisis may be at higher risk of recurrence than previously known”. A recent study at the University of Utah, 2011 showed 23% of families had more than one family member affected with gastroschisis. http://www.ncbi.nlm.nih.gov/pubmed/21987464 . For background on why Utah is uniquely qualified to study multigenerational families please... More > visit: http://www.health.utah.gov/birthdefect/leftNav/studies.html . The survival rate is often quoted to be between 80-90% in *developed* countries (the UK, US and Canada) with access to adequate medical care (as you can see in this article, the mortality rate is 17% http://emedicine.medscape.com/article/403800-overview ) However, in *many* countries the survival rate is 0%. Complications do arise with gastroschisis. Studies show that gastroschisis is the leading cause of pediatric intestinal transplantation http://www.ncbi.nlm.nih.gov/pubmed/17101355 . Additionally, recent studies show that 40% of gastroschisis survivors will need to be readmitted due to complications http://www.ncbi.nlm.nih.gov/pubmed/21311496?dopt=Abstract . There is a litany of medical research about the complications arising from TPN and the chain of events that follows extended use, most notably hepatic injury beginning with cholestasis, an increased risk of contracting NEC which can lead to bowel loss. The US relies on TPN, which can cause the liver to fail with extended use and can require organ transplantation, despite other medically advance countries utilizing Omegaven that has 0 of these complications. We at Avery’s Angels do not utilize scare tactics and are proud partners of leading research. We hope that this helped to address your concerns and provide a few medical studies to support discussion. Feel free to email our Medical Liaison kayte@averysangels.org.< Less
  • By Andrea Montgomery
    Dec 12, 2013
    As a fellow gastroschsis mom, I am literally at a loss for words right now. I cannot read the "Introduction to Gastroschsis" without becoming absolutely livid and sick to my stomach. Where did you get your medical facts? While some of your text is true, the remaining statistics you spout off are mind blowing...to say the least. The condition does NOT appear to be inherited or "run in families." The survival rate is and was during the time this book was published, much higher than you are saying. To say most babies experience detrimental effects from TPN that requires organ transplantation...5-10% of gastro babies have complications (that's not MOST babies, am I right?). I support Gastroschsis research and awareness 110% but what I do not support and will not tolerate, is the use of my child's birth defect as a scare tactic to others.
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Product Details

Publisher
Avery's Angels Gastroschisis Foundation
Published
July 9, 2012
Language
English
Pages
46
Binding
Perfect-bound Paperback
Interior Ink
Full color
Weight
0.56 lbs.
Dimensions (inches)
8.5 wide x 11 tall
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