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Old 04-25-2014, 09:10 PM
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Parents Opt to Keep Conjoined Twins Together

A couple in Indiana, Pa. says they've opted not to separate their newborn conjoined twins because surgery would put both their lives at serious risk.

The brothers were born 14 days ago and they share a heart and liver. Doctors say Garrett and Andrew Stancombe are healthy but the complex surgery might cause one -- or both -- to die.
http://cbsnews.com/news/parents-...wins-together/

I think living as a conjoined twin would be a horrible way to live.
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Old 04-25-2014, 09:15 PM
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The Hensel twins made a pretty good go of it.
Old 04-25-2014, 09:27 PM
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Quote:
Originally Posted by PastTense View Post
A couple in Indiana, Pa. says they've opted not to separate their newborn conjoined twins because surgery would put both their lives at serious risk.

The brothers were born 14 days ago and they share a heart and liver. Doctors say Garrett and Andrew Stancombe are healthy but the complex surgery might cause one -- or both -- to die.
http://cbsnews.com/news/parents-...wins-together/

I think living as a conjoined twin would be a horrible way to live.
You might want to read up on it. And yes, try to see the video of the Hensel girls, made when they were in high school. To find out a little about how conjoined--and separated--twins feel about the choice made for them, I'd suggest "One of Us." Amazon has it in pb.
Old 04-25-2014, 10:39 PM
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The original Hilton Sisters managed to make it work. (Their issues stemmed more from being exploited by their guardians, rather than being conjoined) In fact, they were in the cult classic, Freaks.

Last edited by Guinastasia; 04-25-2014 at 10:40 PM.
Old 04-25-2014, 11:03 PM
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Originally Posted by PastTense View Post
I think living as a conjoined twin would be a horrible way to live.
I think living with the knowledge that your twin died so that you could live would be a horrible way to live.

Or living with the knowledge that you killed both of your kids trying to separate them. Also horrible.

Or dying. Bad choice too.
Old 04-25-2014, 11:11 PM
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There isn't a good choice for the parents. The surgery would put them both at risk.

And the odds that these kids will live for a very long time don't seem so good either.

If that's their choice, then it seems the parents have opted to enjoy their sons for the time they will have them.
Old 04-26-2014, 06:36 AM
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Originally Posted by Baker View Post
And the odds that these kids will live for a very long time don't seem so good either.
Yes and no - while most conjoined twins die very young some pairs have gone on to live long and healthy lives, like Chang and Eng Bunker and Lonnie and Donnie Galyon. So if they get through the next few years with few or no problems they stand a decent chance of living something like a normal lifespan.

Hey, weren't there more posts in this thread yesterday? I seem to remember making one that isn't here anymore...

Maybe the thread was surgically separated?

Last edited by Broomstick; 04-26-2014 at 06:38 AM.
Old 04-26-2014, 07:52 AM
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Originally Posted by Broomstick View Post
Yes and no - while most conjoined twins die very young some pairs have gone on to live long and healthy lives, like Chang and Eng Bunker and Lonnie and Donnie Galyon. So if they get through the next few years with few or no problems they stand a decent chance of living something like a normal lifespan.

Hey, weren't there more posts in this thread yesterday? I seem to remember making one that isn't here anymore...

Maybe the thread was surgically separated?
I;d never heard of the Galyon twins, it's remarkable they lived so long.

But Chang and Eng Bunker were, by todays standards, probably easily seperable. They were two complete people joined only by a thick band of muscle or ligament under their ribcage. According to a biography I read of them they even did consider getting seperated just before they were to be married, but their fiancees, two sisters, urged them not to, deeming the risk too great.
Old 04-26-2014, 08:08 AM
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sharing a heart is very tricky. i wonder if one would need to get a doner heart.
Old 04-26-2014, 08:40 AM
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Well, yeah, if they want both to survive one would need a donor heart.

I think in this case they probably made the right decision, but then, not my child and not my decision to make. I just think a reflexive SEPARATE! is not necessary in the best interests of the twins in all cases.

Even if the Bunkers would be easily separated today, at the time they actually lived such surgery would have been extremely risky, so it's still analogous to the Galyon situation - those two could theoretically be separated with today's medical technology but they don't want to take the chance.

Last edited by Broomstick; 04-26-2014 at 08:41 AM.
Old 04-26-2014, 09:47 AM
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Well, yeah, if they want both to survive one would need a donor heart.
How would that work? The heart has to be hooked to a host of other things in the body to function correctly, does it not? If the heart is not there, I cannot imagine that the supporting plumbing is there either.
Old 04-26-2014, 11:14 AM
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Impossible to know without a really extensive medical examination of the two kids involved as each set of conjoined twins is different.

I suspect one reason that so many of them die at birth or shortly after is because things aren't "hooked up" correctly to begin with. The ones that do well, like the Hensels, were lucky enough that the essential bits all had a viable connection to begin with.

So, there may be instances where a transplant could be done. In other instances it can't be done.

One of the more moving, although very sad, accounts of conjoined twins was written by C. Everett Koop, former surgeon general of the US. He was involved in a case of conjoined twins where they absolutely would not survive if still linked together, both would certainly die, and in fact they were going downhill pretty fast. Unfortunately, only one could be saved. He went into an operating room with two infant patients and basically had to sever one from vital organs in order to save the other. He carried the dead baby out to the parents, so they could hold their son one last time, then went back to finishing the surgery on the surviving boy for several hours, basically reworking the wrongly hooked up bits. I believe in that case the surviving twin went on to a healthy life but I am so glad I have never had to confront a situation like that. These are not easy or routine cases.
Old 04-26-2014, 02:18 PM
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Originally Posted by Broomstick View Post
He went into an operating room with two infant patients and basically had to sever one from vital organs in order to save the other. He carried the dead baby out to the parents, so they could hold their son one last time,
i can't begin to imagine the pain of the parents and of the doctor too.
Old 04-26-2014, 04:43 PM
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I read that the odds of these twins both surviving if separated is between 5 and 25%, so the parents' decision seems entirely rational to me. (unless things deteriorate to the point that keeping them together would be more likely to kill them)
Old 04-26-2014, 05:20 PM
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i can't begin to imagine the pain of the parents and of the doctor too.
Heck with it, I tear up just remembering reading about years after the event.
Old 04-26-2014, 05:25 PM
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Originally Posted by Baker View Post
There isn't a good choice for the parents. The surgery would put them both at risk.

And the odds that these kids will live for a very long time don't seem so good either.

If that's their choice, then it seems the parents have opted to enjoy their sons for the time they will have them.
I was going to pretty much say the same thing. Conjoined twins that share a heart cannot be separated, and usually don't live very long. I remember reading about some girls who lived a relatively normal life until shortly before their death.....at the age of 7.

The Hensels have separate hearts, and doctors think this is why they've lived as long as they have, also in otherwise good health.
Old 04-26-2014, 05:29 PM
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A particularly heartbreaking case was that of Gracie and Rosie Attard from Gozo. They were initially known in the press as Jodie and Mary.

Quote:
Mary, the smaller and weaker twin, was fatally compromised. Her lungs and heart were not properly formed and her brain was primitive, although capable of sustaining life.
Jodie the healthier of the two was essentially keeping her sister alive, but her body could not take the strain and both were dying. Their doctors proposed separation, even though this gave Mary no chance of life, but the parents initially disagreed. The case was then decided by the law with this ruling.

Quote:
...they came down in favour of Jodie's right to life. "Mary has always been fated for early death," said the senior judge, Lord Justice Ward. "Though Mary has the right to life she has little right to be alive.

"She is alive only because, to put it bluntly but nonetheless accurately, she sucks the lifeblood of Jodie and her parasitic living will soon be the cause of Jodie ceasing to live.

"Jodie is entitled to protest that Mary is killing her. The best interests of the twins is to give the chance of life to the child whose actual bodily condition is capable of accepting the chance to her advantage even if that has to be at the cost of the sacrifice of a life.

"I am left in no doubt at all that the scales come down heavily in Jodie's favour."
There's no doubt that this was an agonising decision for all concerned irrc the parents were satisfied for the case to be taken out of their hands and settled by the law. And the outcome for Jodie/Gracie was good.
Old 04-26-2014, 05:30 PM
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We hear lots more about female conjoined twins than male. I've read that males have more complications than girls, and many die shortly after birth. Anyone know about that?
Old 04-26-2014, 05:45 PM
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Originally Posted by rocking chair View Post
sharing a heart is very tricky. i wonder if one would need to get a doner heart.
Yes. A liver can be split, but even if the heart has 8 chambers, the muscle isn't thick enough to split.
The musculature of the left ventricle has to be thick and uninjured to withstand the high pressures it's under.

Donor hearts for infants are hard to find.

Last edited by picunurse; 04-26-2014 at 05:46 PM.
Old 04-26-2014, 06:09 PM
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This is an article, from 2007, about how a young girl has handled being a seperated conjoined twin. She is Eilish Holton, from Ireland, born in 1995, and seperated at the age of three from her sister, who died of cardiac arrest. Her parents said they wouldn't have had the surgery if they'd expected either of the girls would die, although Katie, the deceased twin, did.

http://independent.ie/irish-news...-26108190.html

Last edited by Baker; 04-26-2014 at 06:09 PM.
Old 04-26-2014, 08:25 PM
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Originally Posted by panache45 View Post
We hear lots more about female conjoined twins than male. I've read that males have more complications than girls, and many die shortly after birth. Anyone know about that?
Male conjoined twins are more likely to be stillborn, are more likely to die at birth, and have a higher fatality rate through early life. That doesn't mean none survive, just that the odds seemed to be stacked even more heavily against them than against the girls. If I recall, 3/4 of surviving-to-adult conjoined twins are girls.
Old 04-26-2014, 09:26 PM
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Ladan and Laleh Bijani were adult female conjoined twins from Iran. They both held law degrees.

Their connection was at the head and they were both unhappy with their situation. After being refused by several surgeons they finally found one willing to separate them and both died.
Old 04-26-2014, 09:30 PM
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I think it's the right of adults to make and informed choice about their medical care. My understanding is that the two women knew it was very risky surgery but elected to go ahead anyway.

They were the exception, by the way - most adult conjoined twins do not opt for attempted separation.
Old 04-26-2014, 09:42 PM
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Originally Posted by Tethered Kite View Post
Ladan and Laleh Bijani were adult female conjoined twins from Iran. They both held law degrees.

Their connection was at the head and they were both unhappy with their situation. After being refused by several surgeons they finally found one willing to separate them and both died.
That one really was a heartbreaker. They'd waited and waited for the technology to arrive to make it possible to separate. I really was hoping they'd be able to pull through.
Old 04-27-2014, 12:57 PM
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AFAIK, there has never been a separation of twins conjoined at the head where both survived neurologically intact.
Old 04-27-2014, 02:52 PM
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AFAIK, there has never been a separation of twins conjoined at the head where both survived neurologically intact.
It's the premise of the novel Cutting for Stone, and since the author is a medical doctor, I'd be curious what he based it on. Assuming for our purposes that "weird but still able to become a medical professional" is sufficiently neurologically intact.
Old 04-28-2014, 12:55 AM
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Originally Posted by Baker View Post
I;d never heard of the Galyon twins, it's remarkable they lived so long.

But Chang and Eng Bunker were, by todays standards, probably easily seperable. They were two complete people joined only by a thick band of muscle or ligament under their ribcage. According to a biography I read of them they even did consider getting seperated just before they were to be married, but their fiancees, two sisters, urged them not to, deeming the risk too great.
Actually, their Wikipedia article mentions that their livers were fused, which could probably be easily handled now, but maybe not so much in the mid-1800s.
Old 04-28-2014, 05:42 PM
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It's also not uncommon for one twin to be doing most, if not all, of the kidney work, and possibly that of some other organs. If heart function is unequal enough, it can result in the death of one or both babies.
Old 04-28-2014, 05:43 PM
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Actually, their Wikipedia article mentions that their livers were fused, which could probably be easily handled now, but maybe not so much in the mid-1800s.
On top of it, they lived most of their lives in the pre-anesthetic era.

Their liver was preserved and is on display at a medical museum.
Old 04-28-2014, 05:45 PM
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Originally Posted by Broomstick View Post
Chang and Eng Bunker and Lonnie and Donnie Galyon


Merely by not giving the kids rhyming or alliterative names, the Stancombe parents are already waaaaaaaaaay ahead of the curve.

In seriousness, though, from the reports, I don't think the parents have any really great options. If I were the parent, I guess I'd go with the least interventionist option on the menu, as they seem to be.
Old 04-28-2014, 06:11 PM
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The Schappell twins had rhyming names until one of them changed to "George".

Abby and Brittany Hensel rhyme, but somehow that's not as obnoxious as some of the other combos parents have handed out.
Old 04-28-2014, 06:35 PM
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Except that Abby is short for Abigail, which I'm pretty sure doesn't rhyme with Brittany (not that Abby really does either, IMO).

Last edited by Seanette; 04-28-2014 at 06:35 PM.
Old 04-28-2014, 07:14 PM
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Keep in mind, that while WE may think it would be an awful way to live, this is really their only experience. (I believe that's how the Hensel twins have put it, when people asked them about their situation)

It's possible some may think OUR lives would be a lesser way to live.
Old 04-28-2014, 07:40 PM
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There was a case some years ago (20 or so) of conjoined twins who had a bad prognosis if no surgery was done. The thought was they would not live long in that condition. Also, if they were separated, one would certainly die, and the other stood a good chance of dying. They were separated, and both ended up dying.

Then later the father made headlines for being busted for drugs. Anyone remember this case or the names? It was in the US somewhere.
Old 04-28-2014, 08:13 PM
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Originally Posted by Earl Snake-Hips Tucker View Post
There was a case some years ago (20 or so) of conjoined twins who had a bad prognosis if no surgery was done. The thought was they would not live long in that condition. Also, if they were separated, one would certainly die, and the other stood a good chance of dying. They were separated, and both ended up dying.

Then later the father made headlines for being busted for drugs. Anyone remember this case or the names? It was in the US somewhere.
The Lakeburg twins. I specifically remember this about that set of conjoined twins:
Quote:
Before the surgery, nurses had painted Angela's fingernails pink and left her sister's bare. The infant twins' parents interpreted that as a sign--Amy would die to give Angela a narrow chance at life.
StG

Last edited by StGermain; 04-28-2014 at 08:16 PM.
Old 04-28-2014, 08:18 PM
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Thank you.
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