interesting babies - page 4

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   PediRN
    Bartsocas Papas syndrome....fused TMJ, popliteal webbing, missing fingers, cleft lip and palate.

    Maybe I've been in this business too long, but he's one of the cutest kids ever.

    His parents were first cousins and actually had another baby after him that died in utero with the same syndrome.
  2. by   kids
    Originally posted by PediRN
    Bartsocas Papas syndrome....fused TMJ, popliteal webbing, missing fingers, cleft lip and palate.

    Maybe I've been in this business too long, but he's one of the cutest kids ever.

    His parents were first cousins and actually had another baby after him that died in utero with the same syndrome.
    Amazing this baby lived to delivery, is a lethal disorder.

    http://www3.ncbi.nlm.nih.gov/htbin-p...dispmim?263650
  3. by   dawngloves
    Bartsocas Papas syndrome....

    I had a kid like with that! I didn't know it had a name! He had cardiac problems on top of it all. What a train wreck. We transfered him out in record time!
  4. by   babynurselsa
    I always thought that the Smith's bokk just sheds a whole new light on a trip to Walmart...
    We had a baby one time that had a sydrome, I think it was moon face baby, can't remeber the technical name. Basically the skull calcifies, the eyes were out of the sockets, and the brain tissue was in the cheeks. from the chin down she was perfect. Lived about 2 weeks, was absolutely devastating to see.
  5. by   neonatalRN
    My son had Osteogenesis Imperfecta. He had 8 fractures at birth. Did the baby you had with OI live? I think it was Kristi that said there was an OI in her NICU? 53 fractures, wow. Sounds like it was Type II, the lethal type. My son had Type III, not the lethal type, but he did die, at 5 weeks old, still in the NICU. Separate thread about that.

    Heidi
  6. by   CVnurse08
    Don't have anything to add. Just wanted to say that this is very very sad but interesting thread. Thanks !!
  7. by   NICU_Nurse
    As far as I know, the baby didn't die, but it's possible that something happened and we just didn't hear about it. Unfortunately, once they leave the unit we really lose track of them. It was a very sad case- that was a beautiful baby, but she was very physically deformed (sort of knarled) because of all the fractures, and I imagine it was very painful for her.

    I'm very sorry to hear about your son. (((((((hugging you)))))))
  8. by   mother/babyRN
    In OB these days with ultrasounds, we don't routinely see as much as we used to that we don't expect, however , not too long ago we were all shocked when our perfectly normal labor and delivery turned into a case of ambiguous gender. Mother had been with us awhile in pre term labor and was finally ready...After the birth, she held and comforted the child, and the dad wouldn't have anything to do with him/her ( later, genetic studies determined the infant was a male).....
  9. by   RN from OZ
    I work in a level 3 surgical NICU and I could not begin to list every thing I have seen...trisomy 18, cruduchat, foetal alcohol symdrome, transposition of great arteries, the amniotic bands...sad. the most memorable was a boy who's parents were cousins and he was born with his whole stomach and bowel on the out side it had to be wrapped in saline gauze and hung up to slowly go back in before surgery...it took days..the suffering we see due to intermarriage and drug abuse is criminal. And it is hard on the other parents with their 23weekers after 12 years on IVF.
  10. by   PediRN
    I work in a rehab hospital and we have OI kids that are in their teens.
  11. by   dawngloves
    I'd forgotten about the hydrocephalus kid we deliverd. Huge! I'm talkin' like a pumpkin! Another one we transfered ASAP!
  12. by   MomNRN
    Where I nurse, we have two students with some of the syndromes described above: CHARGE and Cornelia DeLange. Both girls do extremely well considering their circumstances.

    I have many students who have rare disorders, I may have to look into buying that Smith book!
  13. 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.
    Last edit by Mimi2RN on Jul 28, '03

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