Question about Harlequin ichthyosis

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hi i was watching a show on this disorder and was wondering if anyone has ever seen an infant born with this? i only caught a few minutes of the show but i was wondering if anyone knows how rare it is? it was the saddest thing i have ever seen.

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Specializes in cardiac, oncology.

I have not heard of this congental disorder, but found this webpage. http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijpn/vol2n1/harlequin.xml

Sorry I'm not good about how to insert link. This is so sad. The site does say it affects 1 in 300,000 births.

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I saw one years ago, and wish I had never looked at it.

I also wish I had not clicked on the above link. I was not expecting pictures.

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Specializes in LTC, assisted living, med-surg, psych.

I'm not an expert in this area, but I do believe harlequin fetus is a very rare occurrence. Thank God.

I've only seen photos of babies born with this condition, and other than anencephaly, it is the most devastating congenital problem I can think of as it is incompatible with life.

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Specializes in Specializes in L/D, newborn, GYN, LTC, Dialysis.

VERY rare occurence, thank God.

The appearance is to say the least, very upsetting.

In 10 years, I have never personally seen one.

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Specializes in NICU.

We had one recently transferred to us. She basically lived in a puddle of aquaphor. She was nippling ad lib when she was transported back. I have no idea what happens long term. I know that nutritional status is tenuous with these babes. Many have G-tubes for supplementation.

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I saw one years ago, and wish I had never looked at it.

I also wish I had not clicked on the above link. I was not expecting pictures.

There was a picture of this in my Mosby's Medical Dictionary when I was in nursing school and I found it so disturbing I tore it out of the book and threw it away. I wish I had never seen it, and it is one of the reasons I do not believe I could work on a maternity ward.

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I have taken care of a child with this condition. She was about 9 years old at the time and was never expected to live so long. She is lovely, articulate, and an ambassador for her condition. She has a peg as well as eating normally to fulfill her nutritional needs. She needs frequent treatments with lotions, but otherwise lives a normal life.

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Specializes in High Risk In Patient OB/GYN.
I have taken care of a child with this condition. She was about 9 years old at the time and was never expected to live so long. She is lovely, articulate, and an ambassador for her condition. She has a peg as well as eating normally to fulfill her nutritional needs. She needs frequent treatments with lotions, but otherwise lives a normal life.
I just read on the above link and others that the longest recorded survival time was 2.5-3yrs. ??
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there is an 18 year old in the UK. The little girl I know was on Maury Povitch's show at age 7. Its rare, but possible.

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I saw one years ago, and wish I had never looked at it.

I also wish I had not clicked on the above link. I was not expecting pictures.

Then you won't want to view the video.

http://www.vimeo.com/clip:2750

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there is an 18 year old in the UK. The little girl I know was on Maury Povitch's show at age 7. Its rare, but possible.

And you can read about the 18-year old here:

http://www.10news.com/health/3919722/detail.html

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