Monday, July 07, 2008

Lakshmi's Story: The ethics of deciding when someone is broken and needs fixing, and the broader societal implications

Her name is Lakshmi Tatma and she was born in October during the festival for the Hindu goddess Lakshmi. The night before she was born, her mother dreamt of the goddess, who represents prosperity and wealth (worldly and spiritual). She believed it was a sign that her soon-to-be-born child would bring good fortune.

The Tatma family looked forward to good fortune. The rural area of the Indian Behar province where they live is a largely poor region with little access to things we take for granted, such as medical care, stores, and other modern conveniences. Life there is, as National Geographic said, ". . .untouched by the 21st Century."

Due to the poverty and lack of medical care, infants often die or, if sickly or deformed, are sometimes left in fields to die.

This might have been Lakshmi's fate, because she was born with four arms and four legs---the result of an undeveloped parasitic twin.

Her mother was so shocked to see her new daughter that she fainted, but I got the impression, as she told the story, that her faint was brought on by amazement, not horror. Lakshmi's mother was convinced that her daughter was the reincarnation of the goddess Lakshmi. After all, she was born during the festival, after a divine dream, and with eight limbs, just like the goddess.

Her parents decided she had to be cared for exceedingly carefully. Not every family was so blessed as to birth the reincarnation of a goddess. Word of this miracle spread and people traveled from all over the region to see this child. Her father held her in the temple for the goddess, directly across from the statue of the goddess Lakshmi.

Amazed people stood all around, uncomprehending, yet believing. "She is not normal, she is different, she has spare arms and legs like the goddess," a man standing near the girl said, "Clearly she is the reincarnation of the goddess."

Although born in a way that many would call deformed, these people in India instead viewed her as miraculous.

"She has indeed brought good fortune," the village leader said, "People come here from all over, and they spend money, money my village benefits from."

It might be circular proof, but there you have it: born during the festival, eight limbs like the goddess, and bringing prosperity and wealth, both spiritual and worldly.

Who is to say she isn't the reincarnation of the goddess? She's lived up to her promise.

In time, word spread to the cities, and a different kind of pilgrim came to see Lakshmi, now two years old: a medical doctor, in fact, an orthopedic surgeon.

"What kind of life can she have, living like this, with a parasitic twin? She may bring good fortune and cheer to others, but at great cost to herself," the doctor said, "I came to see her, to perform a physical exam, determine if I can fix this, and it appears I can, but first I need to perform more tests back in the city at the hospital."

As he told her parents that he needed the child to come to the city hospital for tests, and told them he believed he could fix their daughter, Lakshmi's parents cast their eyes down, and did not look happy nor grateful.

They believed themselves the parents of a miracle, the reincarnation of a goddess. Their child was a blessing, as she was, for their family and their entire village.

The doctor was thrilled by the medical challenge, and fired by the belief that he could make this child normal.

Meanwhile, friends and relatives in the village and her own family loved her as she was, and relied upon the benefit she brought.

What an ethical quandary, and after he proposed his solution, I believe the doctor began to understand it.

I paused the show at this point. I wanted to think, before I saw what came next. (I was watching the National Geographic show "Girl With Eight Limbs." You can click here to see more information about it, and Google of any of the details will quickly tell you how the story ends. The link goes to a photo of the girl as she was born.)

The drive to fix to normal or supernormal is, in my mind, an offshoot of this incredible strive for perfection we have. Still, sometimes it seems that there can't even be a question. Although, in general, the narrow range of normal and obsession with fixing any deviation from that concerns me, I have always automatically assumed the best interest of the child in a case like this was to perform surgery to correct her to "normal" or as close to normal as possible

But this case made me pause and ponder.

How would I feel in Lakshmi's parent's place? I thought of my own girls and aspects of them, tangible and intangible, that I know will create challenges for them in life. Would I change, or fix, any of those? I've personally had enough rough roads to want to pave a smooth path for my kids, and yet, I don't want them to be clueless or unintentionally heartless. Sometimes, a challenging life can create and open heart and mind that can somehow go beyond sympathy to imagined empathy, even if the person hasn't directly had the experience. I love the idea of my kids having learning times, even as much as I hate it because learning and change can be so very painful and difficult. But what if one was born with a medically correctable defect, either through surgery or medication? If it wasn't life-threatening, would I do it?

In a way, the question becomes: should I give up a goddess to embrace a normal child?

What about this perspective of fixing?

For the Hump Day Hmm this week, share your thoughts about this case or any others regarding some medical or other situation that deviated from the "norm." What do you think about the drive to fix? Do all conditions and situations need fixing? Or do we societally need to consider our need to control, master and manage, and instead spend some time, sometimes, learning how to deal? Or...are those mutually exclusive?

As usual, write your post, link back to here, and come add your link in to Mr. Linky on Wednesday. I highly encourage everyone to visit and comment to all participants. Last week had some awesome posts, so also feel free to archive dive.

In other writing news, I am sponsoring a writing challenge for Moms Speak Up. Everyone is welcome. The question is: how has parenting brought out your political or activist side? Read the entry, but you'll see this could be anything from large to small. There is a prize, and I am hoping to get enough entries to do a nice collection of the essays on the site.

Please feel free to share both of these writing challenges and encourage others to join in. It may sound sappy, but I seriously look forward to reading what you write. I always find a new perspective, get some insight, or enjoy another point of view.

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17 comments:

Queen of the Mayhem said...

Very interesting indeed!

I am off to read more on the girl and her story.

I would imagine, love her as she is or not, I would probably want her to have as normal of a life as possible! HMMMMMMM!

Andrea said...

I know I would never try to make Frances "normal," unless she herself wanted it. But her short stature is not the same thing as a parasitic twin. Wow. What a dilemma.

Robert said...

My wife will certainly have a special perspective on this subject, if she feels okay to write it. I have a similarly different perspective from the norm, having seen special individuals who were not "normal". I hope I'm up to writing it.

jeanie said...

Hmmm - very interesting ponder today.

What is "normal" and why is it what we all strive to attain?

Mary-LUE said...

Hi Julie! I don't think I'll manage to participate in this week's Hump Day Hmm-er, but I hope to squeak out a few this summer.

The questions you ask in regards to this situation are very important, I think. There are many perspectives to be considered, I am sure; however, whenever an issue involves a continuum like this--a question of degree--I think wrestling with it is worthwhile.

flutter said...

God, J this was totally fascinating

Melissa said...

Hmmm...

I had a post in mind that would definitely fit this topic. Although it's a little off beat. Contain your shock at that one.

See ya tomorrow!

EdT. said...

Julie - I must say, you certainly bring out some provocative topics! I already have my post written, and am looking forward to posting it tomorrow.

Keep up the good work!

~EdT.

Jenny, the Bloggess said...

This is such a fascinating story!

Kyla said...

I suppose my question is, what truly makes her the goddess, extra arms and legs or WHO she is? If the answer is WHO she is, then removing the extra limbs should have no bearing on that. If she is only seen as a goddess because of the outside, how true is that really? Are the limbs impeding her ability to live a full and healthy life? Are there gains for HER to be made by removal? Do her parents want to keep her this way for her own good or because of perceived favor of raising the reincarnation of a goddess? If she had been born with one extra limb, not resembling the goddess, but still not being considered normal, would they be fighting to defend it so?

There are so many factors here, beyond appearances, I can't judge the situation from here on the outside. It is interesting, though.

kim said...

Wow. She is a beautiful child. I think in this case where her health was in jeopardy the answer is easy, but if no health threat was posed it does become more difficult. We tend to see things through our own cultural lense.

Bon said...

Kyla eloquently raised a lot of my discomforts with the story...but that doesn't mean i don't have equal discomfort with our cultural compulsion to "fix". especially since we don't seem to spend nearly so much time examining our definitions of normal and what might really warrant fixing.

great topic. will try to throw in my two cents.

Suki said...

Well, I guess here the Powers That Be(in this case the parents/surgeon) have to make that decision based on circumstances.
In that village, Lakshmi is a goddess. She is happier this way than other "normal" girls around her - or so I feel. So why change that?
But in either Kolkata(where i live) or any major city, she'd be considered an aberration. It would be better for her sake to have that surgery.

My take would be - if it causes no inconvenience(which includes stigma and teasing), don't bother with it. And I always, always try to weigh the pros and cons of "syndrome"(heck, even shyness is a syndrome these days) versus its treatment.

Gwen said...

She certainly is one cute kid!

(see how I avoided the question all together with my lookism? Killing two birds with one stone; man, I'm good! ;))

I guess I think being "normal" to a degree is overrated. At the same time, the surgeons said the parasitic twin was "threatening her life," and it looked like she wouldn't be able to walk, so in this case, I don't think it's so much about normalizing as it is about "correcting."

I know parents who have had their young children's ears "pinned," and I am, judgy or not, horrified by that. Lakshmi seems like a much more extreme case, to me, but that probably says something about where I draw my lines.

IJ Reilly said...

Apropos of nothing, I thought I'd mention that though we come from different perspectives, I am consistently envious of your blog title (my own was a silly one-off conceived without thought).

Best,
IJ

Heather said...

http://madamerubies.com/blog/?p=977

I am in. Sort of.

Jenny, the Bloggess said...

Featured on Good Mom/Bad Mom on the Houston Chronicle. http://tinyurl.com/5p8q7b