Nec Disease

[kea6783]

Hey Yall.. I nanny to get through prenursing classes. Today I had twin two year old girls- precious with red hair! Anyway, one of them had NEC when she was about two weeks. They were born at 30 weeks, both laying in the same crib and one got NEC. Evidentally, child had to have her intestines replaced. Then, because of meds after this surgery, her liver was damaged.. repaired part of liver and also replaced pancreas- but left original pancreas in, so now child had two- I didn't understand that part! But, the meds for this surgery took her hearing- now she's completely deaf, but recovering from everything and doing pretty well. Mentally sound, developmentally catching up with her twin sister. Does anyone want to add any info or stories to this thread?

I hadn't ever heard of it, apparently occurs in less than two percent of preemies. I'm learning about so many diseases and disorders by nannying, it's crazy!

Edit: Child is due for cochlear implant in a few months, and will start attending a speech learning center said to do wonders. They will not teach her to sign, but rather teach her all orally and they say they will have her streamlined by kindergarten.

I think this is especially interesting to me because my bf is 75 percent deaf but can communicate wonderfully- his dr says his hearing loss is reversed. He was told his hearing loss is nerve damage that they were able to stop when he was seven.

[Gompers, BSN, RN]

NEC is pretty common for preemies but very rare in full-term babies. This is why most people have never heard of it before - it's not like something a normal baby gets and goes to the ER or pediatrician for. 99% of the time it's a baby that is already in the hospital, usually sick and/or premature. It's a heck of a disease, and while there are tons of theories as to why it happens - so far there is no prevention and cure for it. Precautions, yes. Treatments, yes. But it's still a deadly disease that strikes our babies, often without warning, and it's probably the worst thing a baby in the NICU can get because it is capable of such utter destruction to the bowel.

It's very rare for babies to have bowel and liver transplants and I've never heard of one getting a pancreatic transplant at such an early age. You must live near a great children's hospital! It drives me crazy because whenever we have a baby get very sick with NEC and most of the intestines are lost, the surgeons always bring up the possibility of a bowel and liver transplant with the parents and this gives them hope. However, in my seven years, I've seen at least a dozen babies with such severe bowel loss that a transplant would be the only option for long-term survival - and NONE of them lived long enough to get a transplant. So none of the nurses on my unit agree with touting the surgery as a cure-all since, from what we've seen, it's just a fantasy.

I'm glad the baby you care for was lucky enough to have the surgery. Hopefully it will become more common in the future.

ETA: Most likely, the reason they left in the baby's pancreas is because it probably is still funtioning, but poorly. However, if the pancreas that was transplanted is rejected by the baby's body, at least the baby has SOME pancreatic funtion with the old organ, so if they have to remove the new one the baby is left with something because a poorly funtioning organ is better than none at all. (I'm just going by what I understand about transplants - I have a friend who's had two kidney transplants and still has one of her original kidneys in place, as a back-up.)

[kea6783]

Gompers-

I live in Houston. I believe the babies were treated here originally. But for the transplant they flew to somewhere in Nebraska- evidentally there is a leading hospital there for that, the mother said that were many NEC babies there for transplants.

(interesting about the 'back up' organs, I've never heard of that.)

Edit: Just wanted to add, the mother said the staff told her four times when she left the hospital to be prepared to bury her daughter. I know it sounds cruel, but I don't think false hopes are beneficial. There's no wonder though that premature babies have attachment issues with their parents... thanks Gompers for the Info on the disease.

[Gompers, BSN, RN]

Yep, there is a hospital in Nebraska that was amongst the first to do bowel and liver transplants on babies.

We heard about this hospital many times from the surgeons and GI doctors at our hospital. Again, never had a baby actually GET there so it's like some kind of fairy tale land as far as we're concerned! More hospitals are doing this surgery now, on younger and younger patients, so hopefully someday it'll be a real option for the NEC population.