Extreme Short Gut

[NathCat]

We have a 3 week old baby girl who was born with Gastroschisis at 36weeks. After surgery they found only 50% of the large bowel and only about 20cms of small bowel that was working. Alannah is now on TPN as well as breast feeds and she has a stoma. She is due for another surgery in 3 weeks to see if they can find any more small bowel that will work.
Has anyone had any experience with this amount of small bowel??
Thanks

[momskids193]

There is a support group from the Oley Foundation, called Inspire.  I don't have the web site memorized but it is easy to search out.  I had TPN for over 5 years with no problems.  There are many people and children that depend on TPN for the rest of their life.  It is a life saver if there is no other way to get nutrition.  I may be back on TPN iindefinetly because of severe dumping and gastroparesis.  Right now I am on nJ-tube feeding because I am unable to take much at orally.  TPN can cause a lot of complications besides line infections.  But with good doctors, they do monitor and your little one can do good.  You will be in my prayers and many hugs

[mammo]

I experienced this with my son who had all of his bowel and the majority of his small intestine removed due to disease.  TPN is only good for 2 years, and then as a result, other problems arise, and serious ones.  This is truly not meant to scare you.  They are able to transplant small intestines, as my grandson had a 5 organ tranplant which included the small intestine.  I hope they find more working bowel when they do the surgery, and will keep your baby and all of you in my prayers.  I know it's scary, but there's a lot they can do these days.  Try to stay positive, and I would start asking about options should they not find any more useable small intestine. I don't want you to think negatively, but just be very proactive in getting the answers you need, and being prepared for everything.  Good luck to you and your precious baby..........