acute ttts? - Mothering Forums

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#1 of 20 Old 08-07-2008, 11:31 AM - Thread Starter
 
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I am having mono/di twins. I saw my doc today and he strongly reccomends a ceserian at 34-36 weeks. He has supported both of my vbacs and was ready to support my 3rd until he saw the scans.

Has anyone experienced this before? I am scared to death. I am looking for research and the research I am finding is that there is a high morbidity rate after 32 weeks.

Does anybody have any advice?

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#2 of 20 Old 08-07-2008, 11:45 AM
 
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My twins had chronic TTTS. They were born vaginally at 34w2d. I was a primip with an "unproven" pelvis, but I insisted on a vaginal birth because there was no medical proof that they needed to come urgently by c-s. They were both fine, although they needed a week in the NICU, and now they're healthy 5yos, ready to start kindy this month.

Did you doctor see something on a scan that made him think of acute TTTS? My understanding is that acute TTTS is very rare and only shows up during delivery. I've never heard of a c-s at 34-36w to avoid acute TTTS.

Has your doc seen a lot of cases of TTTS? I'd only see a really experienced provider who isn't going to panic about Mono-di twins.

Or better yet, contact Dr. De Lia - he is very reasonable and INCREDIBLY knowledgable about TTTS. He will give you good advice.

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#3 of 20 Old 08-07-2008, 11:56 AM - Thread Starter
 
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He has had a lot of experience in ttts. He studied under a specialist in London as well. He also performs the lasor surgery on ttts patients.

He didnt see anything unusual on the scan, he just said that it was unpredictable and there weren't big enough studies to know the full extent of it yet. His main concern is the morbidity rate after 34 weeks. Unfortunately, all the research I am finding is backing up what he says.

Im trying to come to a decision and was hoping that maybe somebody had a bit more insight or a more positive study....

I initially wasn't concerned because of the low 15%, but after 34 weeks it goes up to 1 in 25/30.

It also seems if you are chronic ttts your chances for acute ttts aren't as high, but Im not sure why?

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#4 of 20 Old 08-07-2008, 12:26 PM
 
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There is not much research out there on acute TTTS. I've searched for it and I've talked to Dr. DeLia about it. My first set of twins were mono/di and had acute TTTS. Everything was fine and I had a homebirth at 39w1d. My current pregnancy is also mono/di twins and after talking to Dr. DeLia I feel reassured enough to plan another homebirth. An early delivery at 34-36 weeks pretty much guarantees a NICU stay while carrying to term still leaves a slim chance of acute TTTS. If you do find any more information about it, I'd love to see it. I couldn't even find anything out from the TTTS foundation. It seems that it's so rare that most of the focus is on chronic TTTS.

Heather, Army wife & Mama to M (10), J (9), L & S (my HBAC babies are 7!), N & R (5), and A (born 11/30/12 UBA2C)
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#5 of 20 Old 08-07-2008, 02:40 PM
 
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Please get a second opinion.

a 36-37 week cesarean, frankly, I can sort of understand. But unless something is truly major (and why would he NOT have shared this with you in specifics?!?!) a cesarean at 34 weeks is frankly reckless.
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#6 of 20 Old 08-07-2008, 03:48 PM - Thread Starter
 
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His specific reasons were that he is concerned about "Acute TTTS" happening from 34 weeks to term. He mentioned that he had seen cases of babies that were perfectly healthy at 38 weeks only for Acute TTTS to suddenly develop before or during delivery and one or both of the babies die. For my last two births he was a very VBAC friendly doctor but his specific concern this time is primarily that of TTTS and also a bit that I've already had 3 ceasareans. His specific concern about TTTS is that the baby can develop it late from 34 weeks on (even during delivery) and one or both of the babies die whereas taken earlier the babies would be perfectly fine although pre-mature.

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#7 of 20 Old 08-07-2008, 04:05 PM - Thread Starter
 
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For anyone interested, here is a link listing the stories of women that this has happened to.

http://theofficialtwintotwintransfus...TS.html?page=2

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#8 of 20 Old 08-07-2008, 05:56 PM
 
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Does your previous c-s have anything to do with this?

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#9 of 20 Old 08-07-2008, 06:01 PM
 
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Having read that link:

1. One of the stories was about mono-mono twins, not mono-di twins.

2. Both the other stories were moms who seemed to also have issues with protein, pre-e, hellp syndrome, swelling, and unusual pain during pregnancy -- reasons that I'd immediately call my doc!

3. There are still so many unknown factors for acute TTTS.

4. I still don't see a case for a scheduled c-s between 34-36w.

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#10 of 20 Old 08-07-2008, 07:18 PM
 
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Quote:
Originally Posted by DoomaYula View Post
Having read that link:

1. One of the stories was about mono-mono twins, not mono-di twins.

2. Both the other stories were moms who seemed to also have issues with protein, pre-e, hellp syndrome, swelling, and unusual pain during pregnancy -- reasons that I'd immediately call my doc!

3. There are still so many unknown factors for acute TTTS.

4. I still don't see a case for a scheduled c-s between 34-36w.
After browsing that site, those are my exact thoughts. I have twins who were presumed to be mono-di in utero (though found to have fused placentas after birth). I have to agree that 34-36 weeks does seem reckless in the absence of other information about your pregnancy or babies' conditions that would guide you otherwise. How many weeks are you right now?

I will also say that, from everything I've read, acute TTTS is still extraordinarily rare, though the potential complications of being born between 34-36 weeks are well known. (My boys were born at 35w1d of their own design and still spent 10 days in the NICU). I find the odds of acute TTTS something I'd rather chance than take the knowns of prematurity. I wish you the best of luck in making an informed decision!

Cindi, mama to Hannah (7/04) :, Eli & Sam (6/06) :
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#11 of 20 Old 08-07-2008, 08:19 PM
 
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From my experience and reading accute TTS happens about 1 in 1,000,000 births (the number is small enough that exact stats were often stated as less than 1 in 100,000). Yes, it can be horribly devistating and fatal. And Malpractice insurance companies DON'T want to pay out if it happens and are pressuring Doc's to section ALL mono/di twins.

I let them know that I knew and understood and refused a section on those grounds. However, they were going to wait until 37 weeks for me. 34 weeks is just insane without some seriously pressing issues.

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#12 of 20 Old 08-07-2008, 08:41 PM
 
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34 weeks is just insane without some seriously pressing issues.
My twins are di/di, but 34 weeks seems ridiculously early to me.

Wife of one and mom of five, including my HBAC twins!
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#13 of 20 Old 08-08-2008, 12:34 AM
 
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Originally Posted by ~Mom2thhts~ View Post
He didnt see anything unusual on the scan, he just said that it was unpredictable and there weren't big enough studies to know the full extent of it yet.
The problems documented in premature babies are quite a bit better studied than Acute TTTS. Yet this doctor wants to guarantee that you will birth premature babies?!

Quote:
Originally Posted by purpleheather79 View Post
An early delivery at 34-36 weeks pretty much guarantees a NICU stay while carrying to term still leaves a slim chance of acute TTTS. If you do find any more information about it, I'd love to see it. I couldn't even find anything out from the TTTS foundation. It seems that it's so rare that most of the focus is on chronic TTTS.



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Originally Posted by Tigerchild View Post
But unless something is truly major (and why would he NOT have shared this with you in specifics?!?!) a cesarean at 34 weeks is frankly reckless.


Yes, "reckless". I can't believe he's suggesting it when you have no health concerns to prompt such an early delivery.

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#14 of 20 Old 08-08-2008, 04:14 AM
 
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I'm not sure how far along you are. Have you/he basically "ruled out" chronic TTTS at this point?

How has your diet been, and your weight gain? (In terms of # of pounds gained by 20 weeks gestation, 28 weeks gestation, etc.) You probably know that an early weight gain and a diet high in protein & complex carbohydrates (lots of vegetables) improve your odds as far as chronic TTTS, low birthweight, preterm labor and "typical" twin complications. I suspect that the same things, and a good iron level, are protective against acute TTTS, as well. But as stated, there isn't a lot of research or information available about acute TTTS....in terms of what precipitates it, what might protect against it, and what the meaningful statistics are.

I've seen recommendations for delivery via c-section at or by 37 weeks, but 34 weeks? True that there's a chance of acute TTTS developing at and after that time of gestation, but the risks of c-section not to mention the risk of pre-term and near-term issues are much better documented and statistically significant.

Your doctor makes his recommendation based on the hope that he can completely rule out one scary risk, but YOU are the one who will endure the crucible of the NICU experience, not him.

I went through this whole process of decision-making recently (my mono-di boy twins were born on July 20) and it was agonizing. My doctor was recommending an induction after 38 weeks. I felt the safest thing, in terms of acute TTTS, would be a c-section (albeit I would not have considered it at 34 weeks, or at 36 weeks!) but I was not convinced that the risk of acute TTTS justified the risk of elective c-section.

Once I realized that the only thing I really feared was acute TTTS, and I had no real control over that (other than my health, nutrition, etc.), I wasn't comfortable consenting to an induction. (The reasoning for the induction wasn't really the acute TTTS risk, it was more the idea that "twins are 'term' earlier" and that the placental function would diminish with gestational age and complications go up.)

I have a stack of printed articles (obtained online and also through Interlibrary Loan) on subjects like near-term issues with elective delivery of TERM fetuses, are twins "term" early, what is the "ideal" gestational age for delivery of mono-di twins, etc. etc. I read all of those things during my pregnancy and over time, they informed my decision-making pretty solidly.

It still was a difficult process because there is no way to know for sure what will happen. I did become (reasonably) comfortable with the decision to forego elective c-section to lessen risk of acute TTTS, with the acceptance that you only know it would have been the "right thing" after the worst thing happened. That was a part of being informed, for me...realizing that, but still believing that the risk of acute TTTS did not seem to justify the risks of elective c-section.

Who knows....c-section may be right for you, but the window your doctor is suggesting seems REALLY precipitous and I don't know if that could be right.

Good luck to you.
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#15 of 20 Old 08-08-2008, 11:37 AM
 
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I'm mainly a lurker here - just to throw it out there as I'm not going to be "familiar" to any of you.

My boys had acute TTTS during labor. I've tried to find research specifically for Acute TTTS and there is not a lot out there.

I've read that the chances are about 1% (I did find an article on this, unfortunately did not save it and can't find it now).

I thought it was the TTTS Foundation and Dr. DeLia himself, recommending a c-sec between 34-36 to avoid Acute TTTS (I'll look and see if I can find it). The information I got was that for every week you are pregnant after 34 wks, is another week that Acute TTTS could kick in. If you have the c-sec, yes you are dealing with babies that will have a NICU stay, but will most likely be healthy. If you develop Acute TTTS at any week (Acute TTTS is termed for anywhere after 34wks) then your chances of babies with brain damage or dead babies are a lot higher. From what I've read and understand, Acute TTTS happens very rapidly and can be very devastating. There have been cases where a woman had a scan - everything was fine and 24 hours later was in the hospital, and both babies had died from Acute TTTS.

These are not scare tactics - I am a HUGE supporter of intervention-free, med-free, vaginal births for twins. I just know that this is a very real possibility and can see both sides of the fence now. Also, we throw around the low chance of this happening - 1% - but we also know there is not a lot of research on this. Could it be that Acute TTTS happens more often than what is currently being reported or studied? I know our case was not documented in any way - how many others are out there?

Also -for the person that asked could diet ie: iron, protein, etc....be protectors against Acute TTTS. My answer would be, maybe - but certainly not necessarily. In our case, Acute TTTS kicked in during labor (which is another reason I've heard of them pushing c-sec...to avoid labor and in turn avoid Acute TTTS during labor). My diet was excellent.

My twins were born intervention free, med free. They did not have a big weight difference (2 oz) at birth nor did they have any fluid differences at our last scan. There was no indication during labor (heart tones) that anything was amiss until Baby A was born and he was very white and lethargic, he did not pink up and his blood pressure was different between his arm and his leg. Baby B came very quickly, pinked right up and his BP was normal. Further testing showed that Baby A had very low hemoglobin and Baby B had high hemoglobin. Putting it all together, my assumption is that Acute TTTS kicked in toward the end of labor and my labor was short, so we thankfully avoided any brain damage. They are 2 1/2 now and very healthy, just a little behind on speech.

The moral of this long post is that I don't think you can completely dismiss this doctor as being reckless. If you witness a healthy mono/di pregnancy that went devastatingly
wrong at 36 weeks and know that had you taken the babies a week earlier they would be alive and most likely healthy, then I think you would probably advocate for what he/she is. If you are a parent that this happened to, I think you would also advocate for the same.

To the OP - good luck wading through all the information. I would also suggest contacting the TTTS Foundation and Dr. DeLia - I believe they have a packet of info. on TTTS (not sure how much info on Acute) that they would send you. I've also heard that Dr. DeLia is very open to speaking personally with people.

Good luck to you - I'm hoping that this will all be irrelevant to you! Wishing you a very healthy pregnancy and heatlhy babies!

~Andrea
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#16 of 20 Old 08-08-2008, 11:51 AM
 
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Just wanted to add that the huge packet of info from the TTTS Foundation does not address acute TTTS but focuses on chronic TTTS. That led me to call Dr. DeLia and we've had several phone conversations. He did not recommend an elective cesarean or early delivery for me, even though my last set of twins developed acute TTTS. There's no way to predict whether it will happen or not and like everyone has said, it's very rare. Maybe if you call Dr. DeLia he can set your mind at ease.

Heather, Army wife & Mama to M (10), J (9), L & S (my HBAC babies are 7!), N & R (5), and A (born 11/30/12 UBA2C)
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#17 of 20 Old 08-08-2008, 12:21 PM
 
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purpleheather - Wow! MZ twins again! That's awesome (well, I think so anyway...hope you do too!).

I missed your first post, and after you responded went back and read it. I thought that I had read the recommendation on the site, but could be confusing myself. See, I freqent another multiple board where there is a woman who had twins with chronic TTTS and deliverd at....I think 26 wks. She is VERY vocal about the recommendation of ALL mono/di twins having a c-sec between 34-36 weeks. I questioned her on it because I thought the same things as others here were stating....and she always points to Dr. DeLia.....I thought for sure that I then found the recommendation on the site, but I've been looking so that I could post it and can't find it.

Another thing is that I've heard there has been more research done in Europe and the OP said her doc studied in London, so perhaps he's seen more than what we have seen in the US.
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#18 of 20 Old 08-08-2008, 03:14 PM
 
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It's very frustrating to me, this assumption that all preemies live and are just fine.

That is simply not the case.

Yes, the chances with today's technology are excellent. But let us not fool ourselves into thinking that all preemies born after 32 weeks just spend some time in the NICU and then go home healthy and live happily ever after. Perhaps even the overwhelming majority do, but I think when weighing the risks of being born SO early, and by ceasarian, against the risks of a very rare disorder occuring....we should be very honest about how safe the 34 week fetus will be. And in this case, you're dealing with two very early babies.

I do hope the OPer is able to come to a peaceful decision.
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#19 of 20 Old 08-08-2008, 03:49 PM
 
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[QUOTE=Intertwined;11894415]It's very frustrating to me, this assumption that all preemies live and are just fine.

I'm not making assumptions here, that's why I said "most likely". I am fully aware of the health issues a 34wk baby may face - and I'm not one to advocate induction, let a lone a c-sec. However, I'm also very aware of what Acute TTTS can do to babies. We don't have a crystal ball and so the next best thing is to be fully aware of all risks/benefits/disadvantages to a situation and make an informed decision and hope for the best.

My point earlier was relaying what was explained to me, not necessarily my pov. Honestly, I don’t' know where I stand on this and I know my view is a little skewed from our experience. I can see the other side and I am so very grateful that we aren’t there. The thing is, if I were pregnant with mono/di babies again...I would probably not go for the elective c-sec at 34-36 weeks. Why? Probably because my babies turned out fine and as far as we know, it is such a low probability of happening. Had my babies had severe injury or death from Acute TTTS.....I'd probably elect for the c-sec. Had we never experienced Acute TTTS...I'd be in an uproar over this recommendation. This is how we work. I think we take that 1% and say "not us" until it happens to us, or someone close to us. But once you become part of that 1%, it doesn't seem like such a rare thing.
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#20 of 20 Old 08-08-2008, 05:33 PM
 
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Wholehearted seconding calling Dr. DeLia.

I can't believe how much time and concern he pours out to families facing TTTS, but he does. While I personally like getting 2nd opinions from face to face docs, Dr. DeLia was my third opinion, and actually was the only one of the 3 to be right about what actually happened with us, confirmed after the placenta was studied post-birth by the lab.

So sit down with the information you've been given, and email or call his office. It's always good to have a variety of opinions, and he's one of the most experienced voices out there.
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