Check out the photo gallery if you get a chance. The picture of the two girls in the crib is heart-wrenching. Do you think they'll miss each other after the surgery? I mean, this is all they've known, and at their age the joining doesn't even restrict their movement.
Also, check out the part where they had to start the C-section before the anaesthesia could take effect.
posted
Oh my. *gets totally white* Having conjoined twins is my big fear. I guess I won't be happy till I don't know about that when I'll get pregnant. I will pray for them, of course.
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I'm thankful this is a pretty straightforward separation. In other words, the chances for survival are high for both twins with neither one being slated as a "sacrifice."
I'm not going to contest the idea that separation - successful separation - will give the twins lives that will be easier in many ways. But the idea that being conjoined (as the article suggests) equals having NO "quality of life" is one that leads to very troubling situations. For example, in one case in England, a hospital went to court to overrule parents who refused surgery that involved the sacrifice of one of the conjoined twins. The one to be sacrificed had identifiable disabilities and was seen as more expendable and described as a "parasite."
As a matter of fact, there are unseparated twins out there who seem quite happy with their lives. I remember coverage of school-age twins a couple of years ago (I think they were Irish) who appeared to be happy girls. Couldn't remember their names, and couldn't find any of the articles.
I did find one interesting one on this point, though. And it does give a very different perspective on the issue:
quote:READING, Pa. (AP) -- While the doctors who separated conjoined twins in Los Angeles talk about the little girls' prospects for healthy, productive lives, another pair of conjoined twins say that's exactly the life they've lived for 40 years.
The women, one a former hospital worker, the other an aspiring country-western singer, say the separation isn't necessary.
"I don't think it should be done," Lori Schappell told The Associated Press in an interview at the twins' apartment in a high-rise seniors complex. "You don't mess with what God made, even if it means you enjoy both children for a shorter time."
Lori and her sister Reba live a life few people can imagine.
They have two distinct brains, but they are joined at the skull, so where one goes, the other must. Reba, who has spina bifada, is 4 inches shorter than Lori, so her sister wheels her around on an adaptive wheeled stool.
Both sisters graduated from a public high school, and each has taken college classes.
Reba went along for six years while Lori worked full-time in a hospital laundry, a job she gave up in 1996 so Reba could launch a country-music career.
then this bit at the end is really great - to me, anyway.
quote:Eng and Chang Bunker, the 19th century "Siamese Twins" who gained fame as a circus act, lived to be 63. The Schappells, who were born into a family of eight children, knew another pair of conjoined twins, Yvonne and Yvette MacArthur, who died in 1993 at age 43. They also know conjoined twins who are still going strong in their 60s.
Lori and Reba don't ask doctors about their life expectancy. But they say they know that death may one day separate them.
When one does die, they want doctors to attempt surgery so the other can go on living, a procedure that's never been successful in a case like theirs, according to Cardarelli.
"I'm not going to ask her to die for me, and she's not going to ask me to die for her," Lori said.
Please note that stories like those of Reba and Lori Schapell don't get the same attention and prominence that "separation" stories get. For one thing, a lot of these twins are leery of replicating the "freakshow" phenomenon. And, well, hospitals and the medical profession are more interested in boosting "separation" stories than they are "living with being different" stories.
I think these are very complex issues - and most of the coverage we see doesn't begin to scratch the surface.
That being said, I'm keeping my fingers crossed for the little ones. Posts: 4344 | Registered: Mar 2003
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quote:"She has goals in life," said Lori, the ambulatory and more assertive twin. "The only goal I have is marriage and kids -- if it ever happens."
sndrake, You left that bit out. It sounds to me that Lori wants a "normal" life but realize the unlikeliness of it happening. I don't think she is necessarily unhappy the way she is, but there are two sides...
quote:You left that bit out. It sounds to me that Lori wants a "normal" life but realize the unlikeliness of it happening. I don't think she is necessarily unhappy the way she is, but there are two sides...
AJ,
I didn't want to cut and paste the whole article and left the link in.
Edit to add: I think my point was that there was more than one side - and that the article only presented one side.
Even with that statement, it's a stark contrast the statement by today's quote by the mom of the twins facing surgery of having "no quality of life" if they stay joined. It's nonsense - but maybe it's what you have to tell yourself if you're subjecting children to dangerous surgery.
The other part that seems obvious to me is that many men AND women who want to be married and have children DON'T - for one reason or another things don't work out that way for them. It shouldn't equate with "no quality of life." Many of us have frustrated ambitions and desires - disability or difference is just one of many reasons that can happen.
Not sure about kids, but I know that some members of conjoined twin pairs have been able to find romance - it got worked out somehow.
Like I said, though, I don't find this particular surgery too troubling. At least they're not planning on killing one of them and are expecting that both will survive.
In cases where the surgical prognosis is poor or a twin is sacrificed, the issues are a lot murkier - and the justification begins with that "no quality of life" perspective.
posted
The other issue that sometimes comes up in conjoined-twin cases is where one really IS a parasite on the other -- where there is a single heart, for example -- and the odds of continued life for either if they remain conjoined is essentially zero.
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one of the cases I mentioned in my first post was as you described. The parents never used the term "parasite" - that was the term hospital staff and the courts used to make themselves comfortable with forcing this decision. Ascribing ownership of specific organs to one twin or the other was a little problematic as well.
The trade-off was more complex - an unknown number of years of survival for both twins if they stayed joined.
Certain death for one twin (the more disabled one) and a high risk of death for the other one if surgery happened.
The word "parasite," like "vegetable," is a dehumanizing term - and serves to make people comfortable with killing.
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posted
*twinkle* Well, the word I would normally use is rodef, but I couldn't figure out a translation that got the concept (as opposed to the literal word, one who chases) across.
Anyway, I have cheerfully referred to each of my kids (while pregnant or nursing) as a parasite. I meant it solely in the scientific sense -- an organism that survives solely by taking nourishment from another, usually at a cost to the host.
When the heart (for example) is truly shared, I agree that perhaps there is no way to choose. But in at least one case I know of, it was unquestionably the heart of one (the other's was malformed and non-functional). Life expectancy was measured in weeks if they stayed conjoined, and they were measurably sickening day by day.
I pray to never have to make such a choice, but I tend to agree with theirs.
Posts: 32919 | Registered: Mar 2003
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in the case I mentioned, the choice was not made by the parents. After painful deliberation, they decided to let the twins stay the way they were, feeling that they could not, in effect, make a decision to kill one of their daughters.
What made the case - it was in the U.K. - so horrible was the legal battle. That's when the language of "parasite" emerged.
In the U.K. you see a lot more of doctors imposing their values on patients in ways that aren't quite so prevalent here - at least not to blatant. They've had cases of hospitals refusing to treat kids with multiple disabities, ordering withdrawal of feeding tubes withoout consent, and putting "do not resuscitate" orders on patients without their knowledge. It's a more paternalistic system than here and physicians are a little freer to openly override the wishes of patients and families.
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posted
No, I understood that. And I have real problems with courts forcing any medical decision where there is this kind of controversial decision. Actually, I have a problem with courts forcing parents to make ANY medical choice, unless there is abuse or negligence involved.
My point was that sometimes it really DOES come down to choosing for a chance at life for one, versus no chance at life for either. As I said, I pray no never have to make that kind of choice.
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posted
From Dag's article dated to day (though it is way at the bottom)
quote: Then the separation itself was postponed for a week to allow for more skin growth.
And this week, when the tissue expanders were filled with more saline solution, Jade's eyes began moving rapidly back and forth. It happened twice again at home that night. Doctors worried that she might have suffered a stroke or seizure, which could delay the surgery indefinitely.
"Back on the road again," Kevin told the twins Tuesday before scooping them up for the trip to Children's for Jade's brain scan. "You all are road dogs."
Melissa got up slowly from the sofa. "I have a monster headache," she said.
The Medical Dance
Jade's tests come back normal. The 28 boxes on the task force's "Go, No Go" checklist are all marked "yes."
quote: If I understand correctly, shared livers can be divided because a liver can regenerate itself from a small surviving piece. Is that correct?
I think that part is pretty straightforward, Dag. Like any surgery, there are some significant dangers associated with it. But overall, it looks like they really expect both twins to pull through just fine. And they're doing things - like today's postponement of surgery to allow for more skin growth - to maximize the chances of successful recovery.
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posted
Actually, I was asking from curiosity, not as part of the larger discussion.
I haven't been able to form an opinion on the larger issue, because I'm having trouble wrapping my mind around the concept. Were I a parent, I think I'd be frozen in place for a while. My brain rebels at making the decision in the hypothetical.
As you know, I hold little regard for "quality of life" as an excuse to deny care or outright kill, whether pre- or post-birth. Given that there's been less than 800 live conjoined births in recorded history, I may be able to skip taking a firm stand on this one.
Although, I'd have to say this must be THE prestige surgical operation. I wonder how many decisions to separate are colored by the guaranteed celebrity. I won't say caused by it - hopefully no doctor would make a decision based solely on that factor. But having seen decisions that seem to be influenced by possible publicity in my profession, I can't dismiss the though.
quote:Surgeons successfully separated twins conjoined at the chest and abdomen this afternoon at Children's Hospital in the District.
Cheers and applause broke out in the operating room at about 12:30 p.m. as lead surgeon Gary Hartman snipped the last centimeter of tissue connecting four-month-old Jade and Erin Buckles.
Smiling broadly, the hospital's chief of surgery, Kurt Newman, walked into the day room where the twins' parents, Marine Gunnery Sgt. Kevin Buckles and his wife, Melissa, were waiting anxiously.
"You've now got two babies that are separate and they are both doing well," Newman announced.
The liver is one of the few organs that can regenerate, and yes a liver can be reduced to a tenth of its original size and still regenerate to normal size, although this is a very lengthy process.
posted
What an amazing article, Dag! thanks for sharing that!
I especially was amazed at the part when they talked about the hearts being joined by one small non-critical piece of tissue. However, the hearts beat in lockstep, total unison, until they squeezed that tissue to "break" the circuit, and then the hearts beat in separate rhythms. When they let lose of the tissue, they went back into lockstep rhythm... (until they surgically separated them, of course). How cool is that?
posted
I suspect that depends on the relative strengths of the two hearts natural pacemakers (S-A nodes). If one is giving off a stronger signal, it would likely override the other. If they're about the same, then whichever one triggered first would probably trigger the other, and they would start to reinforce each other.
quote:As preparations were madefor discharge from the Newborn Intensive Care Unit, Erin snuggled in her mother's arms while Jade pressed her cheek against her father, Kevin Buckles, 35, a Marine gunnery sergeant.
Nurses gathered up the babies' favorite plush yellow ducklings and other belongings while cardiologist Craig Sable and plastic surgeon Michael Boyajian offered final instructions before shyly asking the Buckleses to pose for some farewell pictures.
...
Conjoined from navel to breastbone, the girls spent their lives before the surgery unable to turn their heads much or see the world with anything but a sidelong glance.
"Now they're so smiley," their mother observed.
For the past week, the girls were well enough to share a crib. "They seem a lot happier and calmer in the same bed," Melissa said. Before that, while recovering in separate isolettes, each girl sometimes slept with a soft cloth bearing her sister's scent -- a technique used to comfort a sick twin separated from a sibling.
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