enjoying the foliage

mermaid girl

Posted on: Monday, December 15, 2008

I have struggled a lot with wanting to write on a variety of topics. I consistently find myself unable to sit down and write without a preconcieved topic, or even elaborate on something not fresh in my mind or that I do not feel strongly about. However, taking two classes that almost straddled the divide in nature between undergrad and graduate work I have found it a lot easier to speak (or write, in this case) on a topic in a clear, concise, accurate fashion. Maybe scientific paper-style writing is not the most appealing medium for extracurricular bloggery but I have been backed into a corner. By this point in my B.Sc. I’m lucky I’m still literate.

I may be the most prolific TV-watcher in the bunch, and I’m not sure if any of you have seen the increasing amounts of one-hour specials TLC has been pumping out documenting extraordinary people, or extraordinary experiences, or on a very good day both. Today I had the good fortune to witness probably the most engaging “documentary” (can you call it a documentary if it’s a one-hour special?) in my limited memory. Unfortunately while I generally enjoy the nature of TLC’s programming, I’m often put off by the sensational and often nearsighted titles they attribute to people and their stories. However, that being said I found “Mermaid Girl” to be poignant, honest, engaging and thorough. Admittedly this is not a biased “review” or even a purposeful one – teratology is an interest of mine and I don’t expect anyone else to share my love of what I like to call Murphy’s Law of the womb.

In addition to taking Teratology this semester, I also took Medical Embryology next semester. While I thoroughly enjoyed the latter it definitely kicked me in the ass, but that didn’t stop me from LOVING TO LEARN. Seriously, what am I. Sirenomelia, also known as mermaid syndrome, is a condition where a child is born with their legs fused together essentially from the waist down. Sirenomelia (or so I had thought) is always fatal, and when discussed in textbooks or scientific literature is usually accompanied by grotesque pictures of stillborn babies born with this rare defect. A little bit of research into the few scientific papers available willy-nilly on Google and able to be accessed for freeee reveal a proposed mechanism, for those of us that may be interested. Like me. Sirenomelia is an incredibly rare birth defect, about on par with conjoined twins. However the vast population of people within our world have provided literature with more than a few cases. Dissection of abdominal vasculature within affected infants appear to reveal a probable mechanism for the constellation of abnormalities seen in mermaid syndrome. Infants are not only born with two legs fused together, but usually possess some combination of absence or malformations of kidney, gastrointestinal and other genitourinary tract issues. A constant feature of dissected infants often reveals existence of hypoplasia of the vasculature distal to the aorta, which would lead to nutritional deficiency in the lower half of the body, accounting for the absence of structures and fusion of lower limbs. ETIOLOGY OVER. No more school I promise.

Shiloh is one of perhaps 4-8 survivors of sirenomelia known in the entire realm of medical literature. Of all survivors known, Shiloh is the only one not to have undergone leg separation surgery, and as such remains the only true “mermaid girl”. Being the only known person in the entire world with her condition, the documentary honestly and thoroughly elaborates on the intricacies of her medical condition, her medical care, and the strength of not only Shiloh but the people that surround her. The willingness of the filmmaker as well as the people in Shiloh’s life that are featured within the documentary to share intimate aspects of their lives is what makes this documentary so compelling. When you’re the only person in the entire world with your legs fused together, being anything but plainspoken fails to address unique concerns in a meaningful fashion.

Sirenomelia can be detected via ultrasound as a rigidness and lack of movement in the legs. Shiloh’s parents obviously knew about the realities of her condition and chose to continue with the pregnancy. Evolving technology in the field of prenatal diagnostics has presented potential parents with the heartbreaking decision of whether to terminate, evolving past society’s general viewpoint on late-term abortion. Shiloh’s mother openly questions her own judgment in bringing her into the world due to the difficulties she will face in her life, which must be comforting to other parents having to make similar choices. Shiloh made medical history and was born alive and relatively healthy in regards to her condition. However, possessing only a fraction of a kidney, she required a kidney transplant at the age of four months old, as well as another at the age of eight.

Shiloh is an incredibly unique girl, even apart from her condition. By my calculations, Shiloh was eight years old at the age of filming, but it’s almost impossible to believe. Shiloh’s happiness and zest for life is so infectious it practically radiates through the TV screen. In addition to her one-of-a-kind personality, she displays a depth of maturity and wisdom in confronting the unique challenges she faces that is unheard of in most adults. Maybe some of it is genetic – her parents are also truly remarkable people. Her father quit his job to fully take care of her and in viewing both her parents’ attitudes its apparent where Shiloh gets her strength and candor. Having, at the time, the second known child born alive with this condition, they had difficult decisions to make early on in Shiloh’s life. No one expected Shiloh to live beyond a few months and her parents had to fight medical providers to put her on dialysis after her first kidney failed.

Maybe one of the reasons I’m so in love with this documentary is what we see of Shiloh’s doctor, who candidly discusses the realities of having to treat a completely novel medical condition resulting in unexpected challenges, such as weight gain and scoliosis. In the documentary, the realities of Shiloh’s mobility and the possibility of leg separation is discussed between the doctor, Shiloh’s parents, and even Shiloh. No decision is made without her, and she is amazingly, perfectly capable at age eight of demonstrating that ability. During a monthly weigh-in in which Shiloh gained wieght while on a diet regiment, Shiloh looks at her mom asking what she did wrong. It’s very apparent that we are all more the same than different.

The documentary even touches on the often taboo subject of puberty and sexuality, with both Shiloh and her parents discussing her future. Shiloh expresses that she would love to one day have a boyfriend, and even refers to her doctor Dr. Hottie. I can’t say I disagree, girl knows her doctors (and hotties). Her mother also discusses the possibility of sex with someone of her anatomy. Her doctor has expressed that it is possible to create a vagina but there will be no sensation attached. Her parents fear that Shiloh will not find someone who loves her for who she is, but after spending an hour with Shiloh I’ve already fallen in love with her. She will probably be married before I will.

I have no idea how much interest this was to anyone. But I loved this documentary and watched it twice in one night.

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2 Responses to "mermaid girl"

That’s really touching. I think we all need occasional reminders of conditions and experiences that challenge the notion of “normal.”

Man, I can watch TLC and Slice for days and days. I should look to see if they’re available online hmm.

I just watched Shiloh’s documentary tonight with my family. I agree with everything you said. Her personality, her charm, her childishness, and her maturity together make such a unique person that Shiloh is. At her monthly weigh-in when the nurse said to her mother that she had gained some weight, Shiloh says to her mother, “I’m sorry.” I can’t help but wonder aloud “why her???” She is smart as she is positive. It breaks my heart to know she will have to face so many more challenges yet I know she doesn’t need anyone to feel sorry for her because despite it all she will face them as bravely as she has.

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