A serious question about two-headed conjoined twins

[Duer 157099]

I know, it's The Lounge, what am I doing with a serious topic here? But anyway

I've seen several documentaries on places like Discovery Health about this phenomenon of so-called parasitic conjoined twins, but the one I watched today really disturbed me. It was the one with the Egyptian baby girl (born in 2004 I think) with a second fully-formed head and brain, but no body or any organs at all below the neck.

They decided to do separation surgery to remove the 2nd head and while I understand their rationale for doing so, it really bothered me. For one, I have no question that this 2nd person was fully conscious and yet she was sacrificed as though she was an extra limb or something. OK, it wasn't quite that casual, but neither did I see the level of respect for human life that I would have expected. I realize that the surgery was an attempt to save the other twin, but I just cannot accept that rationalization, especially under the circumstances.

What I thought was, number one, this condition is so extraordinarily rare why the rush to destroy what could be so valuable to learning about how the brain functions without certain other bodily manifestations, and whether both brains were able to control the one functioning body and to what degree, etc. So many questions could have been asked and possibly answered. The brains were physically joined, it wasn't just the skulls or as in some cases, a twin with two fully formed but unconnected heads. I realize this sounds like I would advocate for "using" this child as a guinea pig of sorts, but as it was, performing the separation surgery was also doing the same and at the direct expense of one of the twins' life (and eventually both of them).

The show mentioned that the longest lived such twin was a boy who lived to age 4 or so and died by a snake bite, so it wasn't even the "parasitic" head that killed him. Nobody knows how long such a child could really live. In fact, I questioned why they didn't rather address the more immediate medical issue which was that the blood supply for both heads was taxing the heart beyond it's capacity, and rather perform some sort of corrective surgery for *that* instead, perhaps a heart transplant or something.

How often does the medical community get the opportunity to study how two brains, two physically connected brains, operate? The lost opportunity is, to me, just stunning. I can imagine "God" smacking his hand against his forehead on this one.

[Bunny]

1. Well, if this is the girl you're referring to, I am stunned that you think she should be made

to endure life this way.

Link to a picture of this girl:

http://images.google.com/imgres?imgurl=&imgrefurl=http://sokpuppet.blogspot.com/2005_02_20_archive.html&usg=__xVIMwigSMcH6ns70VCH79U9dMF4=&h=273&w=377&sz=14&hl=en&start=1&um=1&tbnid=c0HPMWPZwnUc3M:&tbnh=88&tbnw=122&prev=/images%3Fq%3Dtwo-headed%2Begyptian%2Bbaby%2Bgirl%26hl%3Den%26rlz%3D1T4GGLL_enUS300US302%26sa%3DN%26um%3D1

[Duer 157099]

2. Why? I don't get it

As her mother even said, before the surgery she was always happy and smiling, but after the surgery, she never smiled any more.

Perhaps having a second brain connected has a fantastic effect on quality of life? How would we know? And why rule it out without knowing?

[Orrex]

3. If only we had some way to infer the opinions of medical professionals experienced in these matters.

[Duer 157099]

6. ? n/t

[Orrex]

16. It's like this:

It means that highly skilled surgeons were able to assess the likely quality of life--if any--if the twins were to remain conjoined, and the surgeons were able to weigh this against the risks associated with separation surgery.

Subsequent to that analysis, the surgeons concluded that the best choice was to perform the surgery to give the primary twin a better chance for survival.

You're free to speculate on "what might have been," of course, but I think we need to accept that the doctors who spent months studying the case probably had some idea of what they were doing.

[Duer 157099]

28. And, of course, surgeons never attempt new procedures in order to

gain fame for themselves. Never.

[Orrex]

31. That's a pointlessly cynical (and irrelevant) ad hominem

If you can't come up with any better than "the surgeons did it for fame," then you should just admit that you don't actually have an argument.

If some surgeons perform risky surgeries for fame, those surgeons have nothing to do with this case. But if you're suggesting that these surgeons performed the surgery for fame, then you'll need to back that up. Otherwise you're just ranting.

[La Lioness Priyanka]

8. +1

[hippywife]

17. I really, really wish

I hadn't looked at that photo. So very sad for both of those little girls. :cry:

[Rising Phoenix]

4. what is supposed to be an educational channel

my bro and I call the freak channel, because they exploit these medical conditions....and we can't help but watch

mermaid girl
tree man
fattest man
tallest woman

who has not seen these


and the girl who was 16 but her body stayed the same as a 1 year old

[Duer 157099]

5. I view it as educational

Knowledge is power, and remaining ignorant does not help anyone.

Being exposed to the varied physical manifestations of life, as opposed to just the perfect and the beautiful and healthy, is, I believe, not only educational but healthy for humankind as a whole.

It got a stigma as a "freak-show" because society was so cruel and selfish that they made that the only way those people could survive, financially. In fact, I don't doubt that that is also part of the incentive for the current documentaries, that these people exchange medical treatment for being filmed. I think they should get the medical treatment anyway (as should ALL of us, regardless of condition) and if they opt in to filming as an educational vehicle, more power to them.

Things are only "freakish" if people don't ever see them. Exposure is the sure cure for that.

[Rising Phoenix]

7. I agree

I think it horrible, that people, me included are fascinated for the wrong reason. We must learn to grow, see to learn.

[ChickMagic]

26. Mermaid girl

The condition is called sirenomelia. They do look like mermaids
but I don't think they survive very long. I've never seen a
teen with sirenomelia.

[Gormy Cuss]

32. The girl profiled on DH channel died recently at age 10.

She was filmed last year when she was 8 or 9. Most babies born with this condition don't live long because of the extensive congenital deformation of the whole elimination system.

[ChickMagic]

33. One of the docs where I work

did a study on babies with sirenomelia. Most died by the time they were 3, but some lived until 10. None made it into their teens. She thought it was because of the elimination problem you spoke of, but the growth spike occurs at that age and the lower organs have nowhere to grow. She also thought that the flush of hormones had something to do with it as well.

It's a really sad situation.

[La Lioness Priyanka]

9. because her extra head even looks like an extra limb. because your desire to know more about her

condition, doesnt trump her desire or her families desire for her to have a normal life.

unless you are a doctor or the child's parent, i dont see how your idle curiosity trumps their medical opinions and love for the child.

[Duer 157099]

10. But her "extra head" was functional and functioned independently of the other head

There were clearly two fully-formed functional brains. The one head did not have the ability to speak because she had no lungs, but there's no telling what she might have been able to communicate via brainwaves or via the other twin's mouth had they survived intact.

It is *not* idle curiosity on my part; my background is in neuroscience and I've spent a good chunk of my life studying the brain. Sorry if scientific inquiry offends you.

[La Lioness Priyanka]

11. so it would be kinder and less of an outrage to use a human life as a scientific experiment

to see how two headed people work?

i think her parents and doctors had every right not to use her as a experiment. her life had meaning and the extra head that couldn't survive without her organs were leaching of her existence. this of it as abortive procedure

my issue isnt with your scientific queries its more because you are perfectly to let this girls life be ruined to satisfy your curiosity be it idle or neuroscience oriented

a developed brain is not the only indicator of life. she had a life. the extra head did not.

[Duer 157099]

15. If anything, the separation surgery was more "experimental"

than what I was suggesting, which was to leave them intact.

And how do you know what the inner life of the 2nd head was like?

Also, the surgery ended up killing both of the girls.

[Orrex]

19. That's a cruel way to spin it

Also, the surgery ended up killing both of the girls.

No, the surgery removed the parasitic twin. The surgery didn't "end up" killing her; that was the planned outcome, because both girls were just about 100% certain to die otherwise.

And the surgery didn't "end up killing" Manar Maged, either, because the separation surgery was successful. Instead, she died 13 months later due to longterm post-op complications stemming from fluid build-up in the brain.

To say that "the surgery ended up killing both of the girls" is cruelly flippant, as though the surgeons were careless or negligent during the procedure.

[La Lioness Priyanka]

20. also to pretend surgery to enhance a persons life by removing an extra part of their body

is merely experimental, is silly

if i had a growth of any kind, especially one that can deform or kill me, i would want this removed as well. it might kill me to remove it, but its better than 100% change of killing me

[Duer 157099]

29. So a second head with a functional brain is just a "growth?"

And I'm the insensitive one. Right.

[Orrex]

30. Not just a growth. A parasitic growth.

If you woke up tomorrow morning and found that you'd sprouted a nominally functional but parasitic head atop your head, would you see it as a distinct individual as deserving of life as you, or would you take steps to have it removed?

[Deep13]

23. The goal was to save one of them.

The fact that it failed doesn't change the fact that they were both doomed without it.

[Orrex]

18. +1

Right back at you. :hi:

[Deep13]

22. +1.

I have to think that the odds of survival was what drove the decision.

[KamaAina]

12. Did they name the baby "Zaphod"?

:shrug:

[HERVEPA]

27. Disgustingly insensitive.

[KamaAina]

13. dupe

self-delete

[elana i am]

14. the condition of the child (named manar maged)

was craniopagus parasiticus.

with the vestigial head attached she faced a poor prognosis. sometimes, siamese twins can't survive long-term if they stay attached because their physiology works against them. one twin literally becomes a parasite to the other twin. this was the case with manar. the vestigial head was attached to manar at a vital blood vessel to manar's brain. the vestigial head was siphoning off blood from manar's brain and she was suffering from poor circulation. her long-term survival was not good.

she had the surgery, but still died a year later.

[cherish44]

21. I've seen video of Manar before the surgery

It definitely seemed to me the undeveloped twin had some kind of seperate conciousness from Manar. She could cry, smile, react, would sometimes be awake when Manar slept and vice versa. Where these were just primitive functions/instincts or actual thought, I guess we'll never know. What a heart wrenching situation. I can't think of many worse things... to be in a situation where I'd have to sacrifice one of my children to save the other. While Manar didn't survive, I think her medical team did what they thought was best and the best they could with such an extraordinarily rare condition...

[skygazer]

24. I would just like to point out that this has to be among the oddest subject lines

I've seen at DU. Congrats on that. Interesting thread.

[brendan120678]

25. I have no doubt that both of the twins...

experienced consciousness. It's tragic that they both ended up dying from the complication.
It's also tragic the suffering that the family must have had to go through in deciding the proper course of action to take.

Sacrificing the life of one child to potentially save the life of the other is not a choice that any parent should have to make. I know I would hate to be in that position.

[dugaresa]

34. As a mother, I can tell you why the parasitic twin was removed

to give the twin with the best chance of survival a chance at a normal life.

That is what every parents wants for a child. We want our children to be healthy and happy and to lead the best life possible.

Sometimes our desires as parents run contrary to what medical science would like and sometimes it doesn't.

A child is not a science experiment and as much as we would like to learn from such cases, we have to understand that the child is someone's child and their hearts are typically broken when their baby is born with a problem.