Sad case out of India

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What do you do when a child is born with ischiopagus?

  1. Sell her to the circus?

  2. Turn her into an object of religious veneration?

  3. Try surgery to correct the condition as much as possible?

This little girl born with six legs and two arms had the option of all three; she's currently being operated on to remove four of the limbs. I don't think it is an easy decision, except for the fact that her condition is messed up enough that she's not likely to survive to adulthood without the surgery. On the complicating side, the operation costs £100,000, has substantial risk of death or paralysis, and will not restore full, normal morphology. Here's a paper describing the long term outcome of another case of a separation of conjoined twins.

Because we can't rewind the clock, developmental abnormalities often are not correctable—they are treatable, which is a whole different thing, but the doctors can't change the fact that this child is the result of a scrambled developmental process.


I stand corrected. The two medial posterior limbs are arms, so this is a conjoined twin with four arms and four legs, and with the second twin headless.

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Well obviously option #3 is the best option, and dare I say, the only option that is at all ethical. Yes, her morphology may never be what is considered normal, but I don't think her brain has been negatively affected by all this, so she could go the intellectual route (a la Stephen Hawking) and still live a fulfilling life.

It really annoys me when the media refers to deformities like these as "rare mutations", when of course, they are really just developmental abnormalities. PZ, I'm sure it annoys you too.

Looks like it's actually 4 arms & 4 legs. The linked article says it's a parasitic twin, and on the picture, the structure on the bottom looks like a partially developed rib cage.

I also thought it was six legs and two arms at first, and some kind of homeotic mutation, but after reading the article and looking more closely, it seems to actually be four arms and four legs - in the x-ray you can see the ribs below the first set of arms. It's a headless conjoined twin upside down fused at the spine.
I was very impressed with her mother, who said that a lot of people venerate her daughter as a reincarnation of a god and/or especially blessed in her current form, but her only concern is to make life better for her daughter and get the surgery done.

I agree, Ben. To me, it appears to be conjoined twins joined at the base of the spine, with one twin not fully developed.

How the hell are we ever supposed to evolve into our true destiny of giant squid form if we keep preventing change from happening?

[rude, i couldn't help it]

By techskeptic (not verified) on 06 Nov 2007 #permalink

I agree with the 4 arms/4 legs assessment. The distal paired bones for one set of conjoined twin limbs appear to be more like radius/ulna, than tibia/fibula.

Rational thinkers will look at this and say, "how can there be a God?" But evangelicals know that God is just punishing us for our sins. Eating that apple was a huge mistake. God never really got over it, and he's still pissed.

So God hates apples? I knew their fiber-filled goodness was just too good!

All silliness aside, I don't envy this young woman. What could have been done to prevent such a problem? Could have ultrasounds at least seen this occurring?

"Could have ultrasounds at least seen this occurring?"

Sure. But these folks are from rural India, and not only did they lack access to prenatal care, but (according to the linked article), even after the birth and until very recently the kid had never been seen by a physician.

By Sven DiMilo (not verified) on 06 Nov 2007 #permalink

Sad part is that most of the villagers are against this. I mean, I can understand that extra limbs are the hot thing in India but come on, she could die by keeping these.

What could have been done to prevent such a problem? Could have ultrasounds at least seen this occurring?

Zbu, your question touches on a fascinating area of research about what medical interventions and information can and should be carried out in resource-poor locations, and how to do so. The article mentions that she was born to a poor rural family in the northern state of Bihar.

India is an interesting exception to a lot of countries in the developing world in that the science and technology in some regions of India can hold its own with anywhere in the developed world, while other regions are extremely resource-poor. So while many similar cases from the developing world are brought by philanthropic organizations to the US, Europe, Singapore, or Japan for such operations, she is being operated on in Bangalore rather than abroad.

But that's just treatment after the fact; your original question touches on prevention and detection in resource-poor settings. While ultrasound could certainly have detected it, the question of how the mother gets access to the ultrasound technology and qualified readers in a poor rural setting makes the problem much more complex than just the scope of what the technology can and cannot detect.

A lot of very dedicated people are working on the problems your question raises, but it's a long way from being solved. But there's reason for optimism; the convergence of information technology and the attention of major philanthropic organizations like the Gates Foundation is generating hope that at least some of the more pressing problems can successfully be addressed in the near future.

Is it just me, or does this kind of stuff happen frequently in India? Maybe because the population is increasing so rapidly, so there is more chance for genetic mutations? Or is it just that when it happens in America, we keep it a secret so Billy won't get picked on in school?

By Kcanadensis (not verified) on 06 Nov 2007 #permalink

How do Evo-Devo theories explain nature's ability to build viable biomechanisms such as this one? How was the design evolved and activated to dynamically build and organize the special structures required?

Since I mentioned information technology, and since that's been way over-hyped in the past, I should give an example of what I mean about what it can and cannot do.

Information technology would allow a qualified sonogram reader in a developed part of India or anywhere else in the world to read the mother's sonogram by transmitting the image over the Web or phone lines, and to thus make recommendations for treatment way in advance of the birth.

It would *not*:

1) Provide the relevant ultrasound technology on site;

2) Provide a qualified sonographer to administer the ultrasound on site;

3) Relieve any loss of income incurred by the parents to take time off of work to seek medical treatment;

4) Resolve any dispute on the reader's end about who would pay for such a teleconsultation;

5) Guarantee that any best practices recommendations made by the teleconsultant have the resources to be carried out.

So when I invoked IT above, I see it as a major component of addressing the huge problem; it is--despite past feverish over-hyping--certainly no panacea.

Much of our pharmaceutical production has been moved to India, where skilled labor is dirt cheap, there is no language barrier, and environmental protection laws are a sad sick joke. The chemical waste from these plants gets dumped in the nearest low spot, always without treatment.

We know how exquisitely sensitive in utero development is to hormones, and to any hormone analogs. We in the US worry about pregnant women being exposed to trace amounts of insecticides.

So why is anybody surprised India gets more than its share of developmental problems?

Kcanadensis: You're wrong on all counts. If you had read comment #1 you'd see that this is not a mutation, just a developmental abnormality. The rate of increase of a populuation within arbitrary national borders has nothing to do with mutation rate anyway. I don't know where you get the idea that India has more occurrences of this than other places. Have any sources? Anyway, don't forget that India is the second most populous nation on the planet (soon to be the first), so proportionally, it should have a lot more cases like this that other nations with smaller populations.

Speaking as someone who has a very real phobia of birth abnormalities like this, let me say that I've been treading lightly on the net today ever since my wife caught the "8-limbed kid" headline earlier today. My thanks go to you, PZ, for putting up a skeletal image (which I can identify out of the corner of my eye) and not some huge photo which would have had me freaked out all day long. My hats off to all of you who can deal with this sort of thing in a rational matter-- surely this kid needs the best help available to live any sort of normal life.

By Frequent comme… (not verified) on 06 Nov 2007 #permalink

Even if an ultrasound scan had been performed and detected this abnormal development, that does not correct the condition. Correcting the condition in utero is probably completely out of the question. So, the only recourses would have been to let the pregnancy go forward and perform the surgery as is now being done or to terminate the pregnancy. Terminating the pregnancy for this reason creates its own very difficult questions for the parents (and perhaps also for the government).

You know, one thing I wonder is how come the head just got away? I mean, the head sprouts with the rest, no? This is just weird.

Cyde-
My mistake, I realize now that it is a developmental issue, not a genetic one. I knew that and didn't pay any attention to it. I was thinking of all the articles of Indian people with tails and whatnot, although that could be a developmental abnormality too, now that I think about it.
And wrong on all counts? Come on now, you just echoed my statement that they have a rapidly increasing population. Give me a break will ya?

By Kcanadensis (not verified) on 06 Nov 2007 #permalink

Just to back up my questions (as a reminder.. they were questions, not claims) I found an article on the matter, but there's very little info and I don't know if it's legit.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_ui…

But that's about genetic stuff, not developmental. It's also possible that I've just seen a lot of news articles about India and missed out on the other ones (or they were not reported equally).

Sorry I'm a bit off on some of this stuff. I'm learning. I'm taking a course on genetics in a few months!

By Kcanadensis (not verified) on 06 Nov 2007 #permalink

#21-

You know, one thing I wonder is how come the head just got away?

Conjoined twins in mammals are thought to arise at the primitive streak (gastrulation) stage, with incomplete separation of the two embryonic axes. For this particular set of twins, separation and patterning were complete for both sets of extremities, pelvis, and part of the thorax, but apparently the two primitive streaks shared a common head end (prechordal plate region)...or else this cranial region failed to form or pattern properly in the one twin. The girl and her "parasitic" twin would have shared a common amnion and placenta.

Most monozygotic twins arise from earlier splitting of the embryo at the morula or blastocyst/inner cell mass stage.

Is it just me, or does this kind of stuff happen frequently in India? Maybe because the population is increasing so rapidly, so there is more chance for genetic mutations? Or is it just that when it happens in America, we keep it a secret so Billy won't get picked on in school?

A big part of it is probably just that in the US, with much greater access to ultrasound screening, infants like this would be detected before they were born far more often and thus not allowed to come to term. In other words, in the first world, kids like this would never even be born.

Oh yeah, and India has 3 & 1/2 times our population and is a lot more contaminated. That too.

By Jake Boyman (not verified) on 06 Nov 2007 #permalink

Um, does she have motor control over the lower limbs? Just curious. Fascinating.

By just curious (not verified) on 06 Nov 2007 #permalink

[T]his is a conjoined twin with four arms and four legs, and with the second twin headless.

And that, my god, is even worse.

I was just looking at developmental abnormalities over at the website TheFetus.net, and I did run across some article that said that conjoined twins of all types are more prevalent in India and in North Africa. Maybe someone can run this to ground for me... my lunch hour is over :(

By speedwell (not verified) on 06 Nov 2007 #permalink

Abortion and ultrasound access would be my guess. A major abnormality like that would show pretty soon in the pregnancy.

She's a miracle all right. The preferred form of a miracle by god obviously is one that endangers your child's life and requires pay-per-view quality surgery.

Melissa McEwan (#15):
I agree, she is beautiful. I do hope that this surgery works for her and she goes on to live a normal and healthy life.

God requires complex irony to get his jollies.

By Shawn Wilkinson (not verified) on 06 Nov 2007 #permalink

Cyde Weys,

I'm not sure you put that right.. if you'd left out the word "proportionally", I think it would be accurate - they have more people, so it's reasonable to assume (all other things being equal) they'd have more malformed infants. But "proportionally more" means a higher instance per count.. which doesn't follow. All other things being equaL, if there is 1 deformity for every 10,000 births in... Nigeria, say, there should be 1 deformity for every 10,000 births in India.*

Of course, we know there potential are external issues as well. But one doesn't need metal/chemical pollution to produce this unfortunate series of events. Sometimes they just happen. Given that the mother's home is described as poor and very rural, I question whether there is any form of polluting industry anywhere nearby. That is, near enough to have any significant chance of messing up this young lady's life.

What's the instance of spontaneous abortion in this village? How many other malformed fetuses have come to term in the past 50 years? What's the average health of the group as compared to other groups nearby and farther away? Heck, to be crass, how closely related is the mother to the father?

Automatically laying the blame at the feet of industry is just as wrong as pretending some mythical boojum had something to do with it.

-------

* numbers used are methane generated and have no known relation to the real world.

Heck, to be crass, how closely related is the mother to the father?

That shouldn't matter, because we aren't looking at something caused by genes.

-------

Maybe we should actually say it's one individual, with the end of the body (Hox13 or whatever) being expressed in the middle of the, erm, pre-gastrula instead of at the end. That could explain why the 2nd head and neck is missing: there simply was no more room for it.

By David Marjanović, OM (not verified) on 06 Nov 2007 #permalink

I just want to reiterate Carile's point from #4--it's edifying to see that the parents have put the welfare of their daughter above their own religious beliefs. "I believe that Lakshmi is a miracle, a reincarnation, but she is my daughter and she cannot live a normal life like this." If only all parents were this enlightened; googling faith healer+child death results in far too many results.

conjoined twin or chimaera?

#11 "she could die by keeping these."

She looks pretty healthy and happy in the photos. Thankfully the 'parasitic twin' didn't have a head, I could imagine that could be rather awkward.

Apart from having difficulties sitting down it doesn't look like she's in any physiological trouble at all.

I'm interested if she has any motor control over (and sensation in) her "extra" limbs.

The main difficulties she probably will face if she was left untreated would be clothing, stares and avoiding being kidnapped by the circus.

At least in India she's considered a blessing. If she'd been born in an equivalent Western Christian culture she'd likely be a abomnible "devil child" to be burned at the stake (say rural Russia, South America or even parts of the States).

The Hospital where Lakshmi was operated on is in Bangalore http://www.narayanahospitals.com/aboutus.html. It is trying to revolutionise not only health care but also service delivery. The hospital has pioneered low cost health insurance that provides top quality care for pennies (literally - about $0.15 per person per month). The hospital tracked down the family and has footed the entire bill. It's a miracle - the scientific kind. Not the cockamamie "something for god" kind.

She looks pretty healthy and happy in the photos. Thankfully the 'parasitic twin' didn't have a head, I could imagine that could be rather awkward. (ETC)
---

Of course she's happy! She's a blessing to them, she has no reason to be unhappy. But it doesn't mean she is healthy.

There were better pictures on foxnews.com. You could see her whole... The lower limbs were all blueish and red.

http://www.foxnews.com/images/321531/2_62_india320.jpg

Look at that. It's no wonder they say that she would not have lived past adolescence like that. Plus, I guess that the internal functions are a bit messed too. I mean... um, where did she... you know, evacuate?

"If she'd been born in an equivalent Western Christian culture she'd likely be a abomnible "devil child" to be burned at the stake (say rural Russia, South America or even parts of the States).

Posted by: zayzayem"

Really? Can you name any instances where this has actually occurred? I would be interested to know where this is going on, if you you can provide some examples.

I'm a bit confused as to how she manages to eliminate wastes... does her urethra exit somewhere posterior ?

She looks pretty healthy and happy in the photos....
Apart from having difficulties sitting down it doesn't look like she's in any physiological trouble at all.

While fully-formed conjoined twins can live fairly long lives, this case is complicated by the fact that the second twin is parasitic. The upper abdomen does not appear to be fully formed in the second twin and may be missing several vital organs. If the second twin is missing the lungs or the heart, it means the organs of the fully-formed twin will have to work twice as hard to maintain both bodies.

This is usually the reason why operating is a must in these kinds of birth. If left alone, the child most often dies of heart failure or other ailments later in life, once both bodies mature. The organs just can't provide for two bodies. It's rare for children born with parasitic twins to survive long into adulthood.

"I'm a bit confused as to how she manages to eliminate wastes... does her urethra exit somewhere posterior ?"

I wondered the same. They surgically fixed all that. She had two of each but the article I read didn't mention if they had external openings. One assumes they did or she would have died very quickly. I wonder if in that photo, http://www.foxnews.com/images/321531/2_62_india320.jpg, what looks like a belly button isn't...

The Deccan Herald says she is doing fine. I don't usually allow myself to get caught up in these human interest stories but this one's grabbed me. I do wish her well.

Poonam, the mother, is pregnant again by the way and Lakshmi has a sibling Mithalesh. I don't know whether Mithalesh is a boy or a girl or if Mithalesh is younger or older than Lakshmi.

I gotta say Lakshmi's got one of the cutest smiles...

"The upper abdomen does not appear to be fully formed in the second twin and may be missing several vital organs. If the second twin is missing the lungs or the heart, it means the organs of the fully-formed twin will have to work twice as hard to maintain both bodies."

I haven't read anything about hearts or lungs. (Um, without a head could the lungs function even if fully formed?) She had four kidneys but two (one of "hers" and one of the "twins") had died. They "pushed" the twin's live kidney to her.

Um, Out of academic curiosity, if conjoined twin separation is difficult, could a series of crude amputations be possible?

#46-

Um, Out of academic curiosity, if conjoined twin separation is difficult, could a series of crude amputations be possible?

In addition to concerns about shared and functional organs, the blood vessels and risk of hemorrhage during surgery would have to be considered. Separation of conjoined twins (both survived) at a Dallas hospital in 2003 required a 34-hour procedure and a 50+ member surgical team. I don't think crude amputations would be an option, even in the case of a parasitic conjoined twin.

Kcanadensis: Might be just the greater numbers. I mean, a 1 in 10 million developmental mishap would have happened to over 100 people in India (or China).

Heck, to be crass, how closely related is the mother to the father?

That shouldn't matter, because we aren't looking at something caused by genes.

-------

Maybe we should actually say it's one individual, with the end of the body (Hox13 or whatever) being expressed in the middle of the, erm, pre-gastrula instead of at the end. That could explain why the 2nd head and neck is missing: there simply was no more room for it.

By David Marjanović, OM (not verified) on 06 Nov 2007 #permalink