interesting babies - page 5

The CCAM topic prompted me to start this thread. What has been the most interesting baby in your NICU? Examples being syndromes, anomalies, etc..... I'm sure that some of you with many years of... Read More

  1. by   MomNRN
    How tragic! That website brought tears to my eyes. I plan to go back and read more about it.

    I am thanking God for my children!
  2. by   dawngloves
    We see some really sad **** don't we?
  3. by   zambezi
    I am not an ob nurse, but in my community heath rotations in school, i followed up on some kids with various syndromes, the one that I remember most was apgar (?), where the cranial bones do not grow...can't remember all the details... the boy had a shunt, quite misshapen face, trach, various sugeries, etc- it was ongoing...there are some fascinating but terrible things that can happen...
  4. by   kids
    Originally posted by zambezi
    I am not an ob nurse, but in my community heath rotations in school, i followed up on some kids with various syndromes, the one that I remember most was apgar (?), where the cranial bones do not grow...can't remember all the details... the boy had a shunt, quite misshapen face, trach, various sugeries, etc- it was ongoing...there are some fascinating but terrible things that can happen...
    I suspect you mean Apert Syndrome.
  5. by   Mimi2RN
    We briefly had an Apert syndrome girl several years ago. She had multiple anomalies including a right side diaphragmatic hernia. She was intubated and sent to the level III, and passed away the following day.
  6. by   salvati08
    Originally posted by Mimi2RN
    We recently had a baby with Epidermolysis Bullosa. The top layers of skin were missing on parts of his feet, they will have to be grafted. He has blisters in his mouth, that become ulcers....so he doesn't want to eat. His skin peels off at the slightest abrasion, and children need bandages to protect them, as well as covering wounds. It's a very painful disease.

    The parents are second cousins from the Middle East. Probably an arranged marriage. The first baby, a boy, has the same disorder. The second is a girl, and not afflicted.

    www.ebkids.org/

    Ther are several sites, if you look on google. The children are called Butterfly Children, they do keep shedding skin.

    I'll try a photo from this site.
    That is truely one of the saddest things I have ever seen! And that little boy is soooo cute! How upsetting!
  7. by   CatRN
    Had a baby with a cystic hygroma (lymphangioma) on his neck.....his dry weight was 4lbs 10oz and with the hygroma he was 10lbs 2oz. When I walked in, I thought it was a conjoined twin and was looking for the other monitor.....
    Had another one with extraphy of the cochlear sequence....thought if was an oomphalacele but her bladder, urethra, ovaries, and appendix were on the outside through the umbilicus.....didn't expect that at the delivery.....
  8. by   itsnowbegun
    i found this discussion very interesting. i am thinking about NICU, i just received my RN license less than a week ago...so i was trying to see some of the things that i may see in the NICU...
    anyway here are some links for those who couldn't really put a picture to the syndromes/disorders that were mentioned
    http://www.ghorayeb.com/LymphangiomaNeck.html
    www.apert.org
    www.ebkids.org
  9. by   AmericanChai
    Just popping in here (not a NICU nurse- or any nurse for that matter . . .yet).

    My brother had Cornelia DeLange Syndrome. He was born very small, like 4 pounds full term. Classic face and eyebrows, one arm ended at the elbow with a single digit coming off of it. This was in the 70's and it was very very rare at that time, he was like 4 in our state.

    He lived 6 years, had a sense of humor, struggled a lot with surgeries, learned to scoot and roll around the house on the floor, had friends at his school, said a few words. He probably would have lived a long time but sadly he died of shaken baby syndrome and severe beating at age 6. He was just about 23 pounds at the time of death. My mom's !@#$ of a boyfriend did it.

    That Harlequin syndrome looks horrific. I had no idea such a thing existed. Very very sad.
  10. by   NICU_babyRN
    AmericanChai, that sounds awful I'm so sorry for your loss.
    Sadly, one of our babies was also just found to have died of SBS That was after 7 grueling months in the NICU too

    We've seen a few interesting cases lately-VATER, DiGeorge, Tri18....
    I think we see too many VATERs in my unit
    We also had a baby born with a vascularized mass on his chin/neck area. It was awful, and he died of other complications
  11. by   ElvishDNP
    I think the most interesting thing I have seen in wellbaby nursery is a patent urachus. She peed fine through her urethra as well. Nice to see something unusual but fixable.

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