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TTTS and termination??

post #1 of 12
Thread Starter 
This has been a lingering issue with me for a while now. Since joining this site and a few others I have noticed that more people are terminating b/c of TTTS. Is this really necessary? I know what TTTS is but there are so many survivors out there that to me it wouldnt warrant a termination.

What brought this up today is I was talking to my mailman today and he has 2 1/2 y/o twins. A very nice guy and we talked for probably an hour or so about our twins. Found out our experiences are very similiar. His twin girls were born at 30 1/2 weeks, mine at 30. Stayed about the same amount of time in the NICU, similiar issues, etc, etc. Anyways he said that they were planning a home birth but their m/w at 15 weeks recommended an ultrasound b/c she was measuring big. They did it and found out they had TTTS and right off the bat told them that they needed to terminate the pregnancy. They both said no and went on to deliver, early, but healthy babies.

I know this doesnt always work out like this but in your opinion is it worth it???
post #2 of 12
My twins didn't have TTTS, but this line of thought is still CRAZY to me. I would never ever consider terminating.
post #3 of 12
I suppose its a hard, painful decision a family would have to make...but I personally know several people who went through TTTS and they all had both children survive...so no, I wouldn't do it. Although, I would be hard pressed to terminate under any circumstances.
post #4 of 12
My twins had TTTS and the thought of terminating because of that is crazy. My boys are still very young and the outcome is still unknown but i would have never considered that as an option
post #5 of 12
I believe one of two things may be happening with the cases you've heard of. (Though I'm not sure why you're saying you've heard more on this board, to my knowledge none of the mamas whose babies had TTTS have terminated, but I could be wrong)

First, depending on who your doctor is and how up to date they are, yes...this was often discussed as an option because up until fairly recently the survival rate for TTTS was not very good. Which is par for the course considering up until the laser surgery the only options one had for severe TTTS was to siphon the extra amniotic fluid (basically kind of a high volume amniocentisis with all the inherent risks) OR to have a hole poked through the diving membrane to 'even out' the fluid levels between the twins (which only increased the chance of limb/cord entanglement, and essentially turning things in to a mono-mono MZ pregnancy, with all those other risks).

Second, I hate to say it, but a lot of perinatologists engagne in CYA behavior. Frankly, for awhile when my primarily peri was out of town and I was seeing a different doctor every other day during the early stages of our TTTS diagnosis, EVERY SINGLE ONE brought up termination until I had a screaming fit and told them to write 'NO TERMINATION' on the file so that even someone who didn't bother to read the file would see it if they even glanced down, then later sobbed to my real OB about it--she got really pissed and went to bat for me and there was never another problem. I'm not proud of my behavior, but at the same time if they had a freaking clue and actually read my file they would have seen our wishes. Unfortunately every new peri had to reinvent the wheel until my episode, and they'll all want to cover their behinds. So you DO get a lot of pressure sometimes. Having someone tell you every other day when you are still in shock and still learning and at your most vulnerable that 'a lot of people choose to terminate in your situation' can wear you down.

I think the best thing you can do for someone who has a TTTS diagnosis or who knows someone is to give them the TTTS foundation's phone number or direct them to the website. Many doctors are still in the dark ages about treatment/outcomes. Which is somewhat understandable because it IS rare. Like any other rare medical problem, it's going to require a higher level of self-advocacy and education. I was very lucky to have a primary OB who did some of her residency work with Dr. DeLia (one of the world experts) and had a peri office where one of the doctors was also very knowledgable about it (and was putting together a TTTS center right at that time, it wasn't ready during my pregnancy, but it was being arranged!).

So I don't doubt that the old practices/opinions are still in play. And a lot of babies still do die from TTTS complications, particularly those that can't afford a plane ticket to a surgery center (if they qualify in severity, and they're not near one of the 4 places it's offered) or be able to pony up the cost for a surgery that some insurance plans still qualify as 'experimental'. A lot of babies do just fine and aren't discovered to have TTTS until after they're born and and the vein/artery connections are found in the placenta.

So I guess to answer your question, no...I think LESS pregnancies are terminated due to TTTS now, on the whole...but not in areas or amongst folks who don't have all the information. However, after having endured what I and my family endured, I cannot and will not judge anyone who decides to terminate a pregnancy, because I know all too well what it is like to have that kind of pressure when you are so vulnerable, and it was just happenstance that I had strong outside advocates who could counterbalance it.
post #6 of 12
OMG I can't imagine someone telling me to terminate for TTTS! I was fortunate enough that my girls didn't get it but my peri talked about the treatments and early delivery... never termination! We have a hospital 1 hour from Boston that does the laser treatment and there is also amnio. I don't know if I could terminate even under those circumstances. Not to sound morbid, but being prepared to deal with a stillborn baby or babies seems emotionally less stressful then terminating and never knowing if they would have survived. That's my 2 cents.
post #7 of 12
One of my friends had 23 weekers due to TTTS and she was actually given the option to have an abortion instead of deliver, because the little one had less than a 5% chance of making it.

She had a c-section instead and both babies lived...

Obviously, she was very blessed, but I still think it's sad how the off the cuff reaction to TTTS is "terminate".
post #8 of 12
I'm just glad I never had to make a choice about terminating It's also too bad that so many peri's and ob's are not informed about the newest treatments for TTTS.
post #9 of 12
Weird... nobody EVER mentioned termination to me, and my boys had TTTS and I found out at 18w. My doctor was the "mults" doc who'd seen tons of mults, and I don't think yet another case of TTTS phased him.

I have only heard of one case of a couple terminating (read this online), and they found out very early and the TTTS was apparently very severe.
post #10 of 12
Originally Posted by MaryJaneLouise View Post
I'm just glad I never had to make a choice about terminating It's also too bad that so many peri's and ob's are not informed about the newest treatments for TTTS.
I'll ditto this a thousand percent. I am completely pro-choice, but I do find it very painful to hear about someone terminating a twin pregnancy for any reason. However, I realize I don't know all the particulars (medical and otherwise) and am in no position to make judgments about what is surely an agonizing decision.
post #11 of 12
It's so true that a lot of doctors really just don't know that much about TTTS (even though it kills more babies than SIDS!!). I unfortunately had a doctor who seemed very uneducated when it came to twins. I just didn't know it at the time. Anyway, we did lose our girls to TTTS. It was caught so late...we had an amnioreduction, but it was just too late. Looking back, there were so many overlooked signs of TTTS and I'm angered at my doctor for brushing everything off as being "normal" for a twin pregnancy. When we were diagnosed as having TTTS, we, too were given the option of termination (which we of course declined). I think 'legally' this option has to be given, just like in the case of a genetic defect, etc. if found before 24 weeks. It's so sad! Though we lost our girls, we would have done anything for them. I know of so many TTTS babies who were saved.

When we found out we were expecting our second set of monochorionic twins, we were monitored sooooo closely and by two different doctors. Thankfully, they did not develop TTTS and were born healthy at 37 and a half weeks!! Please, if you know you are expecting monochorionic twins, make sure you are monitored well. Take care of yourself and eat a ton of protein!
post #12 of 12
If only more people knew about Dr. De Lia. I've never met him but I talked to him on the phone every week for 16 weeks during my pregnancy.
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