interesting babies

PediRN · Jul 22, 2003

I work in a rehab hospital and we have OI kids that are in their teens.

dawngloves, BSN, RN · Jul 22, 2003

I'd forgotten about the hydrocephalus kid we deliverd. Huge! I'm talkin' like a pumpkin! Another one we transfered ASAP!

MomNRN, BSN, RN · Jul 22, 2003

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!

Mimi2RN, ASN, RN · Jul 28, 2003

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.

http://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.

MomNRN, BSN, RN · Jul 29, 2003

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!

dawngloves, BSN, RN · Jul 29, 2003

We see some really sad **** don't we?

zambezi, BSN, RN · Jul 29, 2003

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...

kids · Jul 29, 2003

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.

Mimi2RN, ASN, RN · Jul 30, 2003

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.

salvati08 · Jul 30, 2003

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.

http://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!

CatRN · Jul 31, 2003

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.....

itsnowbegun · Aug 4, 2003

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

http://www.apert.org

http://www.ebkids.org