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Mono-Di twins and TTTS

post #1 of 12
Thread Starter 

I'm about 16 wks pregnant with mono-di twins and my Dr just told me that even though everything is fine right now (the babies are exactly the same size and everything) and even though I am "the perfect person to be carrying twins" (because I have carried 3 large babies, don't go into early labor (all 3 were overdue) and have overly large healthy placentas right to the end) that I HAVE TO have a C-Section because of the risk of TTTS coming on during labor even if everything is fine up until then... they say it is hospital policy. I can't find anything that says the actual statistics of TTTS coming on during labor/delivery other than most people saying it is rare, they don't seem to have any info on HOW rare or HOW serious it is if it does happen... and I can't seem to find an easy way to find a new Dr. who will at least let me try to have them vaginally.... it would also be a VBAC situation because my last baby was breech (at 10 lb 2 oz) anyway, if anyone has info on statistics or info on a good Dr. in the greater Seattle area.... please help!

 

post #2 of 12

I call bogusness.

 

You need a second opinion.  My twins were diagnosed with TTTS, and it was not considered an automatic cesarean!  The only reason why I did not attempt VBAC was because both of them were transverse and while my doc did do a version for my firstborn (singleton) she would not do it with twins (not sure that is possible anyway, and given the circumstances I feel it was reasonable for her to feel that way).

 

Granted, this was 8 years ago, so god only knows how "protocol" and insurance has changed.

 

Anyway, the Seattle area has a world class TTTS specialist.  (Dr. Martin Walker, practices on the Eastside at both Overlake and Evergreen if I'm not mistaken, and because of that their office sees a lot more TTTS than most practices do.  http://www.eastsidemfm.com/index.htm)  I don't know how greater seattle you mean, but even if you don't see him as your doc I would highly HIGHLY recommend getting a 2nd opinion at least.

 

For better information than the majority of OBs (or other pregnancy/birth professionals, to be quite honest) have about TTTS, please contact the TTTS Foundation (www.tttsfoundation.org). 

 

Of course, your doc admits that there *are no problems* and s/he's trying to bully you into this?  Not a good sign.  Maybe they're doing it out of ignorance or fear.  Chances are your twins don't have TTTS and will never develop it.  Frankly, I would arm myself with good, fact-based and REAL TTTS info (even though you probably won't need it).  I would also call up the hospital to see if that is for real that ALL mo-di twins have to be elective section because of the miniscule risk of TTTS.  I really hope that's not overlake or evergreen, that makes me feel sick to think about.  It's bullcrap.

post #3 of 12

Even though my twins had unequal placenta sharing and were 1 1/2 pounds different in size none of my doctors had a problem with a vaginal delivery.  Even when I developed pre-e and I was induced and got my vaginal delivery.

 

I would definitely find a different doc and hospital if necessary that have more experience with twins. 

post #4 of 12

I would concur with the previous responses! There is a difference between TTTS during pregnancy and acute TTTS that can occur during labor. Neither should be disregarded because they can both be serious, but there's always a *chance* for anything during any pregnancy/delivery. I personally had mono-mono twins, which comes with it's own set of risks and complications, so I can't speak directly on behalf of moms that have had mono-di.

 

Are there any groups or individuals you could reach out to that would have an idea of providers in your area that are more open to a different plan of care? I know in my situation, I had a friend that put word out for me, and I was able to find a doctor that was more supportive of deviating from the "norm". I would really think there should be a decent amount of providers that would be pro-vaginal delivery, especially if your babies aren't showing any signs of TTTS or other distress. I was also given the suggested policies and procedures for my babies, however, they cannot force you to do anything you do not want to do. Though I will admit, it can get intimidating fighting for what you want when everyone is pushing for you to choose something else. I'm a big believer in going with your gut and trusting your mama instincts. 

 

I know it can be overwhelming (especially finding research - believe me, I did the same!!). Sending you happy, successful vibes in your quest to find a provider to bring your sweet babies into the world the way you desire! Good luck!

post #5 of 12

I call bull on that one too.

 

We have mono-di twins vaginally here all the time.  As far as I know, acute TTTS during delivery is extremely rare.  My doctors were not completely opposed to a vaginal birth for my mono-di twins (one with selective IUGR, so therefore there were TTTS-like placental issues) and no one ever breathed a word about the acute type being a risk during birth.  I wish I were able to refer you to someone else!

post #6 of 12
Thread Starter 

Thanks for all the support. :) It is Evergreen hospital that has that policy, I don't know what Overlake's policy is because they aren't on my insurance so I didn't even bother checking it out. I found a place where they don't have any specific policy about delivery of Mono-Di twins in Seattle, the Dr. is Luba Foltz, a friend suggested her because she is pro VBAC. I have an appointment in a couple of weeks to meet with her and go over my records and ultrasound results thus far... (crossing fingers!!) I also need to find out for sure that the hospital itself doesn't have a specific policy in place (its Swedish First Hill) A little farther away, but should be worth the distance if everything works out!

 

thanks again!

 

post #7 of 12

How incredibly disgusting.  Evergreen has really gone downhill.  Forcing all Mono-Di twin moms into a cesarean based on a very remote possibility of a) developing TTTS during delivery and then b) that it would be so acute as to be a problem is barbaric and money grubbing.  :/  I had my REAL TTTS twins at evergreen and there was no such policy then.  Absolutely appalling.

post #8 of 12

I had mono/di twins (finally believing they actually were! LOL) and I would have been allowed to deliver vaginally if not for a transverse Baby A.....

post #9 of 12

Acute TTTS is supposed to be very rare and there is very, very little info out there about it.  (Both of my sets had it-one set born at home, one set by emergency c/s under general anesthesia.)  There's no way to predict it and although some people do favor an early c/s to prevent it, there's not really any evidence that it decreases the rate of acute TTTS, AFAIK.

post #10 of 12

Hi TigerMom, the risk of TTTS is By No Means 'Miniscule' (sic) as you describe it, it is actually between fifteen (15) and twenty percent (20%) of all MoDi Placentations. That is between one in seven (1:7) and One in five (1:5). So while it IS true what you say about how this Mom probably never will develop it, you do her No Good in understating the Risk. While you wish to refer to the newer guidelines regarding Twin Placenta Vascular Accident TPVA / Acute-Form TTTS as "Disgusting", these guidelines refelect the latest knowledge gained in the past few years about this, and are the best Medicine can offer in terms of Risk Management against this form of TTTS, which strikes up to Eleven Percent (11%) of MoDi pregnancies PAST WEEK 35. Acute-form TTTS Offers NO WARNING AT ALL, making the old argument of "If there is No Medical Issue Involved..." Dangerously Invalid. Mom notices the Twins have Stopped Moving. That Is All. I am hoping everything proceeded in a Boring Fashion for this Mom's pregnancy & would like to Respectfully Inquire as to her Outcome... Thank You.

post #11 of 12

I suggest visiting the TTTS foundation, which is a helpful resource:  http://tttsfoundation.org

 

Their "FAQ" on vaginal vs. caesarian delivery states:

 

Quote:
15. Should I deliver my monochorionic twins by cesarean section or vaginally?
This is a personal choice between you and your doctor. Many mothers may choose a c-section before labor begins, so their babies are born quickly, with pediatricians present who can handle complications related to prematurity, TTTS or any other problems with the babies. Occasionally an acute TTTS can occur in labor. There may be reasons for an early delivery such as lack of growth in one baby, or one or both twins go into distress for any reason, or the babies’ lungs are mature and may be ‘safer out then in.’ The mother’s womb might not respond at earlier gestations to induction of labor so a c-section is needed. Mothers wanting vaginal birth should have the babies’ heart rates monitored closely for signs of acute TTTS, and be prepared for an emergency c-section if needed.

 

 

My best advice to you, being part of a family that has undergone TTTS is:  find the absolute best medical care that you can, and stay flexible.  What makes TTTS a bear is the erratic speed at which it progresses (or doesn't).  Some fetuses can tolerate the syndrome for an extended period of time, with proper maternal care (generally including complete bedrest, lots of calories and especially protein, coupled with regular, frequent sonograms to carefully monitor fetal growth), and sometimes the syndrome progresses with dizzying speed.  Find the best maternal fetal medicine specialist you can, explain your situation, and listen carefully to their advice, and then make decisions as needed.

 

Hopefully, this won't be an issue for you.  But, a 15% incidence rate is awfully high, so it's good to be prepared.  Feel free to ask me any questions you like (although I'll tell you straight up that the best answer for all of them is going to be "Find a maternal fetal medicine specialist you trust!"

post #12 of 12

If you can, I'd definitely change docs and / or hospitals.  Whatever your decision ultimately is regarding timing and mode of delivery, those decisions should be your families' decision, made with good information and based on you particular situation.  A doctor who's unwilling to discuss a patient's informed preferences raises serious red flags for me.

 

Good news is that you have some time to find a better doc, and that things are good so far.  You might find your local twin club and ask around for who liked their doc, maybe at a local LLL chapter too.

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