Posted By HFHSM.D.-ym on July 03, 1998 at 13:59:15:
In Reply to: NEC/Short Bowel (due to surgeries) posted by Songia Washington on July 01, 1998 at 21:09:29:
Hello. I would like to introduce myself as a current NICU mom in the NOVA area. My baby is currently in the INOVA FAIRFAX Hospital NICU. He was born April 27, 1998 weighing 2lbs, 11ozs at FAIR OAKS. Two weeks later he had to be transported to Fairfax due to Necrotizing Entercolitis. One week later he had to have 2 surgeries which resulted in the removal of his small and large intestines. Now he is 2 months, 4 days old weighing in at 5lbs, 9ozs. He is still on TPN & Lipids nutrition. His feedings have increased from initially 1cc to presently 5ccs. He also continues to have low platelets resulting in transfusions.
He is truely a miracle from GOD. I would like to know if anyone else's infant has had this awful NEC and short bowel syndrome as a result? If so, could you offer some advise and what were your experience with the situation for your baby? The hospital tells me that this will be a long haul for us now that he has gotten over this hump. With my FAITH in GOD, I know we can make it. It would be nice to communicate with someone else who made has gone this route. Thanks in advance and GOD's blessings.
Congratulations on the birth of your baby boy. You have all been through a rough time but once you get adjusted to him and his needs I hope that you will be able to enjoy years of joy. Nectrotizing enterocolitis is a condition seen in premature infants that often requires multiple intestinal surgeries resulting in the short bowel syndrome. If your son had more than half of his intestines removed, it is likely that he will require long term total parenteral nutrition (TPN) to be able to meet his nutritional needs. Long term TPN is associated with complications including catheter related complications, metabolic complications and the development of chronic liver disease. If more than 60% of his intestine remains, especially if the duodenum and part of the colon is still present, it is possible that with time (probably years) the remaining intestine will adapt and he will be able to meet his caloric needs with oral and enteral nutrition. Some centers are now performing small bowel transplantation in infants with necrotizing enterocolitis and the short bowel syndrome. The long-term results of this surgery are better than they were years ago, but I think at this point, long term TPN still affords a better survival. This may change in the future with improved surgical techniques, better immunosuppressive medications to prevent rejection and improved methods to prevent opportunistic infections. You may also want to post your communication in the Maternal & Child Forum to see if there are other mothers in your situation. Good luck to you.
This response is being provided for general informational purposes only and should not be considered medical advice or consultation. Always check with your personal physician when you have a question pertaining to your health.
*Keywords: short bowel syndrome, necrotizing enterocolitis, total parenteral nutrition, small bowel transplantation
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