1. Has anyone had a baby deliver with an encephalocele and know of the long term prognosis? We attended the delivery expecting the baby to be anacephalic and we were caught off guard by the baby crying and pink. It is sad to see the parents going through this...the entire brain is basically in the sac outside the head. They were taking the baby to surgery to cut it off. So, basically the baby would have brain stem function. Outside of the encephalocele, the baby is perfect.

    Christine, RNC, BSN
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    About sunnysideup09

    Joined: Sep '05; Posts: 227; Likes: 54


  3. by   BlueYYsRN
    I havent evr seen that myself. How utterly sad.
  4. by   BabyNurse513
    I just admitted a baby with an encephalocele a month or so ago. He only had a small amount of brain matter in his which they just put back in and closed him up. . I know they were working him for dandy walker, he had other stuff going on though I can't remember what. He went home not long after surgery, no O2, po feeding, but I am not sure what the implications are for him long term, if any.
  5. by   dawngloves
    I've only seen one.We covered his head in wet to dry dressing and he roomed in with the parents at thier request and then went home with them for hospice.
  6. by   Gompers
    We had one last year. She had a very large defect, about the size of a grapefruit, that started on the top of her head and kind of drooped down her forehead, and it looked like her eyes and nose were severely deformed. We covered it with warm saline-soakd gauze and Saran Wrap for about three days, then they took her to surgery. They were shocked to find that, despite what all the pre-op tests showed, much less of the brain was in the sac than they had expected! They fixed her up, and it was amazing to see her after surgery! She had tons of sutures on her face and forehead...but she looked totally normal otherwise. They had thought her eyes and nose would need cosmetic correction but they were just fine when all the swelling went down. Even covered in ugly sutures, we cried with her mom about how beautiful she looked post-op!

    Baby went home about a week later, all PO feeding, good prognosis.
  7. by   Jolie
    I've seen 2 babies with encephaloceles, and both did amazingly well.

    The first was one of a set of triplets was born at about 30 weeks, making surgery even more difficult due to his small size. But he recovered well, being discharged home on full po feedings. He continued to receive PT after DC due to some muscle tone issues, but seemed to be pretty well on target with his "normal" brothers.

    The second baby delivered at our Level II hospital, despite our objections, because the mother's insurance would not cover delivery at a tertiary care center. Prior arrangements had been made for the transport team to be "on call", but we believed the baby's defect to be quite large, so we weren't sure prior to delivery whether a repair would be attempted, or whether the parents would choose comfort measures only.

    The defect was quite large, but the baby was immediately pink and vigorous at birth. In fact, our greatest fear was that she would somehow get her hands on the exposed tissue, injuring it. The transport team was slow in arriving, so we had the defect covered, an IV started, antibiotics going, and took the baby out to mom in recovery to wait for the transport team. She remained pink and vigorous, trying to suck. Apparently, her surgery went very well, and she was DC home in a few weeks. The parents brought her up to visit once, at a couple of months of age, and she seemed to be perfectly normal developmentally.

    It amazed me in both cases, how well the babies did, at least initially. I would be curious to learn of their long-term developmental status.
  8. by   suebird3
    Just trying to visualize this, folks. I give ya all credit.
  9. by   BittyBabyGrower
    We get about one a year it seems. We had one that had the defect taken off, made a DNR and sent home with hospice...when the kid tried to die the parents (who really don't have a lot of education or understanding) freaked and recended the DNR...the kid has been in PICU for about a month now, trying to die, but is still a full code.

    We had another that went home...I just saw here...cute as a button, pretty much on track but got a shunt and a trach...but she is doing well and has a great family.

    We just had one that had a huge defect along with anecelphaly and to a hospice care center. The nurses on the regular floor refused to take care of the baby (who ate well) and we had to be assigned this kid over on another floor (okay....how LEGAL is that?????) because the mom wanted the baby with her. What a mess.
  10. by   abad6
    help me on my report bout encephalocele
  11. by   Gompers
    Quote from abad6
    help me on my report bout encephalocele


    We're not going to do your homework for you, but there is tons of information out there on the internet and (gasp!) in the library.
  12. by   perfectbluebuildings
    I have never heard of this. It sounds like a very wide range of outcomes. Just wondering to the OP- do you know what was the eventual outcome of this particular baby?