Conjoined twins operation - Mothering Forums

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#1 of 18 Old 10-12-2003, 09:29 AM - Thread Starter
 
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MOVE ALONG FOLKS - THERE'S NOTHING HERE TO SEE ANYMORE: ONE CAN'T THINK AROUND HERE WITHOUT BEING ACCUSED OF BEING A HEARTLESS PERSON.
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#2 of 18 Old 10-12-2003, 10:23 AM
 
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The dad has been with them the whole time they were in Texas, so while it sucks that the mother wasn't there, they did have a parent with them who loves them.
Conjoined twins really freak me out. I don't think I would have the wherewithal to parent children in that situation. They can't have much of a life joined at the crown like that, and the surgery seems to be a death sentence. Nobody wins in this situation.
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#3 of 18 Old 10-12-2003, 10:55 AM - Thread Starter
 
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Quote:
Originally posted by Elphaba
the surgery seems to be a death sentence. Nobody wins in this situation.
so true
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#4 of 18 Old 10-12-2003, 01:21 PM
 
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I think that the parents are doing the best they can, and doing it out of love for their sons.

Personally, it really makes me angry when people NOT involved in a particular situation of potential life-threatening disability or severe disability pass judgement on parents who are.

It also kind of pisses me off that apparently a dad's love is worthless in the face of mom not being able to be there. But that's another subject for another day.

It seems to me that this family is in a damned if you do, damned if you don't situation. What kind of life, exactly, would one expect them to have? We think the economy is depressed here. We think that people with disfigurements and/or disabilities are discriminated against here, where we do have at least marginal laws of protection. It's a lot worse in both those regards over in Egypt. Second, sharing blood connections within the brain is not some fun and interesting oddity. If one were to have some kind of circulatory complication that would mean severe problems for both. Having faced the very real prospect of one twin dying or having a severe problem and 'bleeding out' into the other through 2/3rds of my pregnancy (which would have caused severe brain damage or CP or eventual fetal death of the other one), I cannot even IMAGINE the hell as a parent I would face if I had to worry about that for every day for the rest of my life.

We are outsiders looking in. Yeah, it's real easy for us to say "Oh, surely they could just live with it!" Yet I don't know how those boys would be treated by their community growing up, if they would ever be given the opportunity to grow and thrive or if they'd have to be shut up away from people all the time. Who the hell is anyone to question how much those parents love them because they can't BOTH be there all the time? If I had to spend a protracted period away from my daughter, while she would miss me, *she would not be an unloved child*. Her daddy loves her JUST as much as I do. He stays home with her, just like I do. When I was in and out of the hospital for months, she had absolutely NO problems because of their beautiful, strong relationship. It makes me angry that a daddy's love and presence is rejected as inferior!!!

I do not judge those parents. Maybe I wouldn't have made the same decision, but maybe I would. I am so frikkin' glad that the decisions I had to make regarding the medical care of my boys were NEVER as complicated or high-stakes as the ones they've made. And I'm happy that the boys have their Daddy with them, even if Mama and brother can't be. That means that both parents are full time with their children, when those kids need them the most. I'm glad that the twins' sibling is getting one on one time with mama now, because the dynamics will definitely change once the twins are home.
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#5 of 18 Old 10-12-2003, 01:33 PM
 
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Oh how sad.

I hope the operation goes well and the family has peace.

Kay

 

 

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#6 of 18 Old 10-12-2003, 01:34 PM
 
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According to the article I saw the mother is with them now.

http://www.roadrunner.com/v5/2/news/...~1~9000_517553

Quote:
He returned this week with his wife and the twins' young brother, Mahmoud.
This is such a tragic situation and I cannot imagine the grief this family is going through knowing the risks this surgery has.

The way they are conjoined though I cannot blame them for the seperation.

I cannot imagine being in such a situation. How difficult it must be..how hard it must have been to make such a decision.

I will be praying for this family and their boys. I really hope this goes well. There was another surgery where the twins were connected by their spines and they were able to seperate them and those twins can now walk and everything. This sounds more difficult though.

Children at specialized hospitals like this often receive a lot of attention from the staff in addition to thier families. I am sure they feel very loved.

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#7 of 18 Old 10-12-2003, 01:43 PM
 
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elphaba, i agree that surgery is the only option, in this case. if you look at the photo i don't think they could walk or play well in the way they are conjoined. but this made me sad:

Quote:
Originally posted by Elphaba
Conjoined twins really freak me out. I don't think I would have the wherewithal to parent children in that situation.
replace conjoined twins with down syndrome or cerebral palsy. you would prob. not say the same thing. if you were given the chance to raise conjoined twins they would not "freak you out," they would be your babies. you would love them unconditionally & want to do all you could to help them grow & thrive.

i think of the twin girls who share legs & arms but have 2 heads~ btittany & ??? they are adamant about not wanting to be separated, & their life is full & happy. BUT they can walk & stuff on their own, these boys would not be able to do that.

no matter what their parents do they will be condemned at a time when they need to be taken care of & embraced. & that is sad.
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#8 of 18 Old 10-12-2003, 03:28 PM
 
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you are right, i would not say the same thing about a child with CP or DS. i thought a LOT about what kinds of disabilities i could handle in a child, and the only thing i could think of that i could not handle was conjoined twins.
so i'm sorry that upsets you, but that's how i feel.

these parents are in a horrible situation, and i don't even want to imagine how scared the twins must be, staying a foreign hospital and having skin expanders placed in their skulls and now undergoing surgery. and the parents must be terrified. i would almost certainly be taking some sort of sedative if my child was having her skull sawed open.
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#9 of 18 Old 10-12-2003, 03:35 PM
 
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elphaba, !

it only made me sad to think that you would not give yourself the credit~ as in, i think you would do great if you were thrust in that situation. i respect the way you feel though, & hope i didn;t offend ya.

you said:
Quote:
i would almost certainly be taking some sort of sedative if my child was having her skull sawed open.
this i totally can see. i cried when joe had blood taken from his finger~ i cannot imagine the terror these parents are feeling.
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#10 of 18 Old 10-12-2003, 04:12 PM - Thread Starter
 
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I asked questions. I didn't expound upon all the other thoughts and feelings I had regarding this case. I'm sure it was a difficult decision. I don't know how I would have responded if faced with the same situation. My thoughts are, however, that two conjoined boys - who may never walk or run - who may have real challenges living as they are - are alive and well. They hope that the results of this operation will be somewhere between the best and worst case scenerio. I think that I'd not take the surgery - guaranteeing that I'd have two boys whose brains are unhampered, but have physical handicaps. A lot of people alive today have physical handicaps and are very much comtributing to society. Am I to be blamed because I think they could be respected and live a full life without surgery?

I did not intend to insinuate that a father's love is not enough. Where did I say his love was inferior? But I would suspect that if my son didn't see me for more than half his life - he may wonder how much I love him. I realize that the situation called for it - I did not call the parents neglectful because of it, I simply stated that was concerned about loved the boys may have felt, having to live without their mother for more than half their lives. It must be a terriffying time for them.

I shared my questions about it. Questioning is not judging. It is questioning. I felt it was a shame to mess up this fascinating relationship, where the chances are slim that both boys will come out of this undamaged.
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#11 of 18 Old 10-12-2003, 11:38 PM
 
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While I am not sure of the particular details of this families situation, I am quite familiar with Egyptian culture as my DH is Egyptian.

The mother probably stayed in Egypt because if she is muslim, and I presume she is (only 6% of the pop. is christian in egypt), it would be unconventional for her to travel without a male companion. While she does not need her husband/father's permission to travel (as in Saudia Arabia), it would still be highly unlikely that a woman would travel and stay alone in a foreign country.

Also, as they are from a small village 500 miles south of Cairo, it would not surprise me if the mother was "afraid" to travel by herself to America and be alone for such a long while.
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#12 of 18 Old 10-13-2003, 12:06 AM
 
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Things are looking good so far.

http://www.cnn.com/2003/HEALTH/10/12...ins/index.html

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#13 of 18 Old 10-13-2003, 04:09 AM - Thread Starter
 
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Honestly - I AM NOT BLAMING THE PARENTS BECAUSE OF THE DIFFICULTIES OF THIS SITUATION - THE SEPARATION MUST HAVE BE HORRIBLE FOR ALL CONCERNED! THE DECISION FOR THIS MUST HAVE BEEN VERY DIFFICULT; I AM SURE! THE PARENTS ARE DOING THEIR VERY BEST WITH A HORRIBLE LIFE SITUATION. I HAD SOME QUESTIONS ABOUT AN IMPERFECT SITUATION. I NEVER MEANT TO BLAME ANYONE. EXCUSE ME FOR QUESTIONING AND HAVING A DIFFERENT OPINION!!
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#14 of 18 Old 10-13-2003, 08:37 AM
 
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Ok, an article linked to the CNN article about these twins is weirding me out.

http://www.cnn.com/2003/WORLD/europe....ap/index.html

It says Greek male/female twins, joined at the temple, were also recently separated. Now, different sexed twins can not come from the same egg. So how did they end up fused? How did they even end up in the same amniotic sac? :
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#15 of 18 Old 10-13-2003, 01:59 PM
 
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Daryylll... Yikes! I'd like an explaination of that too.
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#16 of 18 Old 10-13-2003, 10:28 PM
 
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Hil, I'm pretty sure fraternals cannot share a sac. I think CNN screwed up the story. At the Advocate from England I found the same story but:
Quote:
ROME (AP) - Four-month-old twin girls joined at the temple were successfully separated after 12 hours of surgery at a Rome hospital, a hospital official said.
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#17 of 18 Old 10-14-2003, 02:18 AM
 
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Dizygotic twins can appear, in rare instances, to share a sac. They don't come by it in the same way that monozygotic twins do. There are two 'sacs', BTW...one that holds the amniotic fluid (the amnion), and then one that surrounds that (the chorion--I think I'm right on those names, but it's been awhile). In the case of DZ twins, there could be a perforation of membranes that then heal and grow together. However, you'd think that there would also be problems of arm and/or leg malforations because of the bands of ruined membrane...but as long as there was enough fluid that might not be a problem.

Once the placenta is out, it is VERY HARD to determine where the membranes were unless it's sent to pathology for the equivalent of an autopsy. Those folks wouldn't have a problem...but a glance by the OB in the delivery room might lead to misleading surface judgements.

Scientists know VERY little about twinning, what causes it, and what all can happen (especially stuff that goes wrong). Twin To Twin Transfusion Sydrome (something that arises when twins share artery-to-vein vascular connections through the placenta) is almost exclusively something that happens to MZ twins, but there have been one or two cases of it happening in DZ twins (both involved zygote transfers though, so they think that perhaps it was related to something mechanical). It's also possible for MZ twins to be in a situation where one has a chromosomal disorder and one does not. Unfortunately, most twin placentas, even MZs-with-problems, are NOT sent to pathology and if they are the results are not collected in a database (which would be invaluable to studying these things).

Our boys had severe TTTS at 16 weeks, and we qualified for a somewhat rare and still experimental surgery one week, but then things alternated improving and getting worse, which nocked us out of the surgery possibilities. By the time of birth, our 'donor' and 'recipient' twins had *switched off*, which has never been documented before. (And they both survived, despite early onset with no intervention. And Dylan went from absence of distolic blood flow--essentially his blood would move backwards inbetween heartbeats...NOT GOOD--to completely normal within 4 months. ) Our pathology report is being sent to several databases. Many of the specialists we talked to during the course of my pregnancy admitted that scientists/doctors know practically zip about placentas, how they're formed, how they get hurt, why they function they way that they do (either poorly or not), ect. And placental problems are fairly common. So I'd venture to say that science is largely ignorant about the whys of conjoined twins or if they necessarily MUST happen solely in MZ twins (though again, if it were to happen in DZ twins the mechanics would be different, of course.).

I think the answer to your question is that NOBODY really knows. It certainly might be possible, or evidence might look like it--but no one will know if that that's really what's happening.

I used to find this sort of stuff fascinating, until it was necessary for me to learn about it. Now I know too much (little?) for my tastes. I really wish more brilliant minds were researching THIS type of thing than nuclear weapons though.

Edited again to add: Oh yeah, to add to the confusion and possibilities, scientists also now believe that sometimes one egg can divide pre-fertilization. So you could have a pair of twins that's technically from one egg, but still developed from two zygotes. Which is why terms like 'MZ' and 'DZ' twins are more accurate than identical and fraternal--but in this particular case I think that really blurs the line.
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#18 of 18 Old 10-14-2003, 09:12 AM
 
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Tigerchild, thanks so much for the science. It was fascinatingand helpful. And I am glad your babies are OK!!!

Kama, thx for doing more research on the weird story of different sexed twins being conjoined. You are right, CNN must have got it wrong and no one questioned it b/c so many people think different sexed twins can be ID! Duh. Twin moms in my group get that all the time.
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