The Mermaid Girl

I’ve always loved reality and documentary sort of shows. In the 3rd grade when everyone else was watching Babs Bunny I was watching Rescue 911.

The 2 main channels I watch are TLC and DiscoveryHealth. Right now, I’m watching a show called The Mermaid Girl. I thought I would blog about it as I watch it. I’m always thinking of things while I watch those sort of shows then I forget all my thoughts immediately afterwards.

http://www.gva.be/nieuws/wetenschap/default.asp?art=1430FE9D-86F1-4EB9-ACF1-E81F2C54A0E1

Sometimes when I watch shows about things such as “The Mermaid Girl” with people who have no background in medicine or genetics. Their first reaction tend to be one of shock, horror, or they unintentionally make inappropriate comments. As the show goes on and the more they learn about a specific condition/disorder/disease….the more accepting they seem to become. The more they start to see the person for who he/she is really is and they start to look past the condition/disorder/disease.

Education is the key to acceptance. I know that from first-hand experiences.

Anyways, back to “The Mermaid Girl.” I have to admit that the name of the show bothered me at first, because I wasn’t sure if that was what the producer decided to “label” her. After all she does have a name (Shiloh). I couldn’t help but think of the negative association between the person known as Elephant Man. It is believed now that he had a genetic condition called neurofibromatosis 1 (NF1). Maybe it’s just me but I think a person’s perspective of this man differs when he’s referred to as Elephant Man vs. a man who happened to have a genetic condition, NF1.

http://en.wikipedia.org/wiki/Joseph_Merrick

Anyways, after thinking about it and after Shiloh (the 8 year old girl in TLC’s The Mermaid Girl) stated that she doesn’t care if she’s called Mermaid Girl….I got to thinking that mermaids tend to be associated with being mysterious and beautiful. That maybe it is actually a positive association.

Mermaid syndrome is actually known as sirenomelia (named after siren, the Latin word for mermaid). Many do not survive to birth or past a few days after birth. Shiloh has fused legs from waist down, no rectum, no genitalia, no uterus, no bladder, quarter of kidney, and 6 inches of large intestine. She has had 150 medical procedures including 2 kidney transplants.

Shiloh’s mother broke down into tears at one point because she said she felt almost selfish for having decided to give birth to Shiloh. She knew that life would be difficult for Shiloh and places the blame on herself in some ways.

Here are some comments Shiloh made about having sirenomelia:
“Some people are same, some people are different, and some people are short. Look, I’m not even quite the same as others but people like me.”

“That’s the way I was made when I was born and it feels pretty good.”

“It doesn’t really matter what you call me, you can call me mermaid girl.”

Towards the end of the show, they discuss the possibility of separating her legs. It’s several years of surgery that may not have a positive outcome. Shiloh becomes upset at the possibility of having numerous surgeries. I’m quoting Shiloh’s mother here.
“How much do you try to fix something if in the process you lose her life?”

The narrator.
“Should she remain the worlds’ only mermaid girl or face surgery to make her like any other girl?”

This brings up the concept of embracing a “disability” as something that makes a person unique in this world where everyone tries to be like each other. Or should one try to hide their “disability” by trying to fit in and be like everyone else?

Shiloh’s parents decide to include Shiloh in the decision making process. Her parents share their concerns with her and encourage her to talk about it with Dr. Matt (who Shiloh calls Dr. Hottie). At this time, they have decided not to separate her legs. They want her to live life the way she is because that’s the only way she’s known and she’s happy with who she is.

Thoughts?