[student456]

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.

[esrun00]

I have not heard of this congental disorder, but found this webpage. http://www.ispub.com/ostia/index.php.../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.

[Mulan]

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.

[VivaLasViejas]

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.

[SmilingBluEyes]

VERY rare occurence, thank God.

The appearance is to say the least, very upsetting.

In 10 years, I have never personally seen one.

[2curlygirls]

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.

[GoLytely]

Originally Posted by Mulan

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.

[Silkybo]

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.

[KellNY]

Originally Posted by Silkybo

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. ??

[Silkybo]

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.