nec

[drmommy]

how often does nec affect premature babys born at just 25 weeks and birth weight of 1lb 50z. how early does this show up  and what is the prognoisis considering  the baby is in other wise good health?

[Yao Sun, MD, PhD]

Generally speaking, necrotizing enterocolitis (NEC) can affect somewhere between 5% - 15% of babies born at 25 weeks of gestational age.  Symptoms of NEC can include abdominal distension, bloody stools, and general instability.  The diagnosis of NEC is based on both clinical findings as well as abdominal X-ray findings.

In extremely premature infants who develop NEC, the mortality rate can range from approximately 10 - 45%.  Survivors may go on to do well without any further complications.  If the baby requires surgery for NEC (usually only when the intestines are seriously injured and develop a hole), there may be other complications.  NEC can also cause partial or complete intestinal obstruction as a complication.

As you can tell, NEC is a serious illness, and the neonatologists caring for extremely premature infants are constantly evaluating the babies for the possibiltiy of NEC.

[tasha111]

I am 19 yrs old and have an identical twin sister who has had to endure my problems aswell as 7 yrs of severe bullying at primary school. As a result PTSD, clinical anxiety and bouts of depression have been detected. Are here any "siblings" programs or anything online which may help the siblings with disabilities?
I seem to lead (and led even when in primary school facing the terrible situation of having "accidents" as a child - still a positive outlook on life) I was wondering if there is anyone else on this website who can relate or has NEC?
A significant portion of my large intestine and rectum was removed and the doctors tried everything. I still hve NO idea how my parents even managed to stay sane or not let feelings of guilt or "what did we do wrong" questions etc. as I stayed in hospital for the first 3-4 yrs of my life and had consistent checkups. At one stage they were asked to cosider me as having a permanent colostmy bag with me for the rest of my life. As I requied surgery, even when out of hospital you could imagine my sister would have to adapt to me being at home. And when  I went to preschool although more primary school WE had to endure physical, psychological and verbal abuse! AS IF we needed (or our family for that matter) needed to see this happen for the entire K-6 schooling yrs and us with very limited friends. :( We had to stay because it was the only school suitable to "take care of me" within range (athough they were useless and did NOTHING to stop me and a few others from severely getting bullied). Are here any school programs that are available  or maybe would be usueful one day to consider? I have looked into IBS medications etc. to help me with my problems too.
Since I have no large intestine or "bowel" I would like to know if I should discuss the issue with a gynocologyst to see if I am still able to have children one day. (at the time when I was little they said to my parents I would still be able to, but should I get it checked out again?) How does having NEC affect preggnancy? And the mild-moderate scars on my arm/bowel/stomach areas may/are affecting my confidence when I go out or even where dresses as it shows the horrible indentations and division of the long scars indenting my stomach. Should I consider plastic sregery aswell? I was told not untl 25 yrs of age because that is when I would approx. stop growing and mos likely a suitable time than now. (although now is still a possibility).

I used to find my "accidents" SO embarassing as a child and even as an adult. But with the understanding and caring friends I do have I've found that they don't mind. However, I find these "problems" and issues are still affecting my ability to have a relationship with a partner (hetosexual relationship) and even sometimes meet new friends. (I'm always quite easy-going to make friends). Trusting new friends however is still a significant problem. It's not that I can't, just that the anxiety and worries from the previous 7 yrs bullying kicks-in sometimes.

Oh, and if I do have to go to hospitals for check-ups - gastrointerologist, gynocologist, nutritionist (for my low ruffage no fibre diet which also affects my energy levels severely ie. fatigue), dietitian (who tried to put me on the elimination diet but I couldn't because half the "low risk" allergies list contained ruffage/fibre was unsuitable so I don't get to know what my tolerances are towards foods. I just know "don't eat this" "dont eat that" "this has a massive affect on me" "that one is ok or has minimal"....as well as a plastic surgeon and my psychologist. Because I went so often to hospitals and all they did was do countless operations (and I mean countless!) etc to help me I STILL very much hate doctors (except my favourites who I trust very few). So how canI convince myself to step through the doors of the hospital again? apart from the fact that I am weary of doctors examining me by physically touching my stomach etc. I am ok if I know what' goin to happen. If its an examination or a discussion. It's just being out the front and entering the hospital walking around, which is very hard to do. How do I  overcome that?

(If anyone has any questions the woudl like to ask me on living with NEC please don't hesitate to ask.)
thanks