mono/di twins and early diagnosis of ttts

Hi everyone, I am 11 weeks 3 days with mono/di twins. We had an u/s today to look for the membrane which we found but then the doctor told us that twin b has a large nuchal (4mm?) and that we could be looking at ttts. Our babies were the result of IVF so the one embryo had PGD testing before it split so we're pretty certain that it is not down syndrome. Just in case, we are doing CVS tomorrow morning to rule out anything genetic. If it is ttts, does anyone know how early it can be treated? I'm scared. I'm emotionally on edge. I just saw both of my babies jumping around on u/s and twin B was sucking its thumb. For the first time I felt bonded to my babies and then we got the news. I thought ttts happened later in pregnancy. Did anyone else have an early diagnosis of ttts?


midori

 

At 18 weeks TTTS was brought up as a possibility and by 28 weeks I was admitted to the hospital and being treated for severe TTTS. Good luck to you, it can be diagnosed at any time. There are a lot of good websites on TTTS. Keep us updated.

 

Yay for finding a membrane! We didn't find ours until 16 weeks.

I'm not too sure about the correlation between nuchal measurement and TTTS. It is certainly not a diagnosis of TTTS. I don't think TTTS can be diagnosed on NT alone (if at all) - it is diagnosed by fluid levels, doppler readings, growth discrepancies and bladders or signs of hydrops.

I had mo/di twin girls and at 12 weeks they were 1 week apart in growth, at 16 weeks they were 20% different in growth, at 18 weeks one twin had no fluid an abnormal doppler readings. I was put on bedrest and protein drinks and everything stabilized by 22 weeks or so. I should add that their NT measurements at 12 weeks was normal. I stayed on bedrest and protein drinks for 21 (yes!) weeks and delivered small but healthy girls at 38w4d by c-section because they were breech.

I do know that TTTS can be treated with laser surgery at about 16-18 weeks. Until then, I'm not sure there is any treatment. Another option for treatment is serial amnioreductions, to take out excess fluid from the recipient baby.

That said, my TTTS which was severe at the time stabilized with only bedrest and protein drinks. So, my advice to you would to get as much horizontal rest as possible (to maximize blood flow to the uterus), boost your protein intake, drink lots of water and get lots of calories.

At about 16 weeks you should be seen biweekly to check: fluid levels, cord doppler readings, visible bladders, signs of hydrops and growth discrepancies - that's what defines TTTS.

Until then, try to take care of yourself, relax, and know that there are treatments for TTTS and to find a doctor and peri that will help you. Also you can go to the TTTS foundation website and join the message boards - there is a thread there now about NT measurements, in fact.

Good luck - PM me anytime if you need someone to talk to - I know what a roller coaster it is.

Jenny

 

Thanks. It was our perinatologist that told us that we were at risk for losing our entire pregnancy. At first she said that it was down syndrome in one of the twins but not the other. But after talking to the geneticist, she said that it was likely ttts. She came around her desk and gave me a hug and told me how sorry she was and that no one wanted to hear they were going to lose their babies. After reading your posts, my husband and I are really upset. I've been so sick with morning sickness all day and couldn't stand the taste of meats. (I've lost 3 pounds or so with not much weight to spare.) She knew about the m/s two weeks ago when we first went in. The very least she could have told us was that we needed to be getting protein from somewhere. We are not very sure that she knows anything about identical twin pregnancies since she was talking selective reduction in order to try to save one of them. The doctor that did our CVS this morning agreed that it was a 1 in 3 chance that we had ttts but that there was no reason to get that worried yet since there was no indication that twin b was significantly bigger than twin a. He felt like I just needed to be monitored more and see if ttts did present and if so, how badly. Worst case scenario was that we'd have to do the laser but that is kind of last resort. (I think this doctor reads a lot about this kind of thing. he seemed to know a lot of statistical numbers.)

Anyway, hubby is now trying to shove Boost Hi Protein and some yucky chocolate protein bars down my throat and he's got me propped up in bed with my computer. We're going to look for another peri.

On a bright and happy note, we got a 3D u/s of our little babies snuggled side by side sleeping. I'll post as soon as hubby hooks up the scanner to my computer. (He's such a sweetie.)

Midori

 

:hug99: I'm really glad you are looking for a new peri. I'm glad the dr. that did the CVS was really encouraging! Please keep us updated.

 

here's the sonogram with the two snuggling
http://picasaweb.google.com/shesMaddie/Son...381855926342850

 

I've never heard anything about the nuchal fold and TTTS being at all related. I would certainly be looking for a new peri. That information is completely confusing and makes no sense. Hopefully, you'll find someone quickly and they will give you good info so you can relax and enjoy the rest of your pregnancy.

 

Hi
I noticed that you were in Northern Va. I saw docs at Hopkins hospital and they have a multiples clinic there that I cannot speak highly enough of. I know that Dr. Crino - who heads up the clinic is well versed in TTTS and was being trained in the laser surgery. If its not too far I'd try to see if you can get in there. Just call Maternal Fetal Med at Hopkins. For each visit during my pregnancy theyd send me for an u/s to check fluid levels and growth before my appt and 2-3 high risk docs would meet with me for my appt and go over all the data. I felt like they really knew what they were doing - which was very reassuring. PM me if you have any questions.
Good luck and try not to stress.

 

QUOTE(ese @ Aug 19 2008, 11:15 PM) [snapback]938259[/snapback]
Hi
I noticed that you were in Northern Va. I saw docs at Hopkins hospital and they have a multiples clinic there that I cannot speak highly enough of. I know that Dr. Crino - who heads up the clinic is well versed in TTTS and was being trained in the laser surgery. If its not too far I'd try to see if you can get in there. Just call Maternal Fetal Med at Hopkins. For each visit during my pregnancy theyd send me for an u/s to check fluid levels and growth before my appt and 2-3 high risk docs would meet with me for my appt and go over all the data. I felt like they really knew what they were doing - which was very reassuring. PM me if you have any questions.
Good luck and try not to stress.


Thanks, I will look in to them. We were going to Inova Fairfax. We were supposed to be seeing several different doctors there but the only one we've seen has been Dr. Al-Koury the two times we were there. My husband Peter is pretty angry about how much she scared us. We are supposed to go for another appointment next week but if we can't get a different doctor, we might have to cancel. There's no point in seeing a doctor that is unfamiliar with our situation.

 

I have also never heard of any connection between nuchal fold and TTTS either. I don't see how they would be related.

Since you have some worries, definitely put yourself on partial bedrest and start drinking 3 of the protein shakes everyday. Drink a lot of water as well. The increase in protein as a treatment for TTTS is a relatively new idea so I wouldn't use your peri's lack of knowledge about it as cause for worry. Still, there are other things in your story that would cause me to consider changing peris and hospitals.

 

At 12 weeks we found out we were having twins a few days later they "suspected" ttts due to difference in fluid. The next day I was sent to a specialist. They were a few days apart in size which could be normal that early on. Nothing they could do until 16 weeks so I came back at 15 weeks where I was confirmed ttts. Still no bladder in baby b, fluid differences abnormal doppler/blood flow. I was sent to University of Md to see about surgery because I would have been 16 weeks. Never had the surgery because we stayed stable going back and forth every week with them doing well then not so well. We made it through the whole pregnancy in stage 2 needing no intervention other than weekly monitoring. Induced at 36 weeks and took two healthy babies home with us. Our nuchal fold test was normal. I've never heard of that having any relation to ttts but I'm not a dr. We too were offered selective reduction and I choke up in tears writing this as I look at a perfect baby b that we wouldn't have if we chose that. I figured as long as she was fighting every week I couldn't make that choice. At least our dr's were compassionate. It was presented to us in a way that they were describing the whole situation in depth. That we needed to know our options and possibilities. They also said even though it was being offered that as well as we were doing they saw no reason for it either. You get so much info that it is very overwhelming and scary. I wish you the best.

 

I would definitely find a new peri - there's no reason to be alarmist at 12 weeks with a large NT measurement! That's a little premature! Especially with no strong connection between TTTS and NT measurement! Yes, mo/di twins are higher risk, but I don't think there's any reason for your dr to scare you like that over that measurement alone. Also, a higher NT measurement is NOT necessarily a sign of Down's either (higher risk, maybe, but not a diagnosis!) - sheesh!

TTTS can't really develop until a placenta develops well anyway - and even then it doesn't start to be a problem until the babies get bigger! We were offered the choice of cord ligation of my donor and I didn't even consider it - I was determined to get my babies here safely, and luckily it worked out for us.

Truthfully, frequent monitoring is key starting at 15-16 weeks. Until then, do what you can. I ate horribly too, but I choked down 3 Boost High Protein drinks a day in addition to the rest of my food. Do what you can - I'm not much of a meat eater either - cottage cheese, peanut butter, beans, milk, tofu, protein bars, drinks are all good options.


TTTS CAN BE TREATED. Find a dr that won't freak you out - will look at all the options and monitor you frequently. Really, it is ok right now - just do what you can!

 

My situation is very similar to yours. Right now I am 19w 6d with mono/di boys. We got pregnant through IVF and also had PGD. We transferred one embyo which then split into twins. At my NT screen, twin A had a normal NT at 1.2mm and twin B had an increased NT at 2.6mm. We also did the first trimester bloodwork screen, which came back abnormal with a risk of Downs at 1 in 28. I believe that the abnormal screen was mostly due to the twins, the higher NT in twin B and my advanced maternal age (40!). We were referred to an excellent perinatologist at 15w 6d who did our ultrasound and amniocentesis. Even though we had a normal PGD report, there are some reports of trisomy 21 babies born after normal PGD, so we elected to proceed with amniocentesis. The results came back that both boys are chromosomally normal. On the ultrasound there were no soft markers for Downs, but we did discover a growth discordance. Twin B was measuring about a week ahead of twin A. At that point he expressed concern about TTTS and gave us 50/50 odds of developing this. I did some internet reading and put myself on protein supplementation (whey protein smoothies). Bedrest is not possible because I work fulltime. We have since had weekly ultrasounds and we still have a 7-10 day growth discordance, but both twins are growing appropriately, we have adequate amniotic fluid, visible bladders, and good cord diastolic flow. We will continue weekly monitoring because we continue at risk for TTTS. None of my doctors seem concerned about the size difference as long as it remains constant and they continue to grow appropriately. We are keeping our fingers crossed for that through the remainder of the pregnancy.

One great resource I found through all of this is a website called "asknbob". Once you register, you are allowed to email Dr. Carrie, who is a perinatologist in California, as many questions as you can come up with throughout your pregnancy. She always emails her answers within a few hours she is very informative. I always seemed to get more questions between my ob/perinatologist visits and she was able to provide answers. This also allowed me to go to the next appt better equiped to process the information and ask the right questions.

BTW, this is my first time to ever post on a forum, so I hope this works and that I'm doing this properly. I'm not much of a computer person, but I've been looking through these forums and when I saw your post it sounded so familiar that I was inspired to register!

Kimberlea

 

I'm sorry you're having to go through this. I don't have any direct experience with ID twins but I work at a Children's Hospital that has a Fetal Medicine Program. They are experts in dealing with TTTS and other fetal issues. Most Peris refer to them when there is difficulty as they have even more experience than the Peris usually do. If there is a Fetal Center close to you, I would make an appointment. If nothing is close, come up to Philly. They would be happy to consult over the phone first and give you an idea where you are and what you might want to do as you progress in your pg. I hope everything turns out well and your Dr is just mistaken.

 

It's so funny (i guess) but I remember none of the technical stuff that went along with my TTTS diagnosis. I think I was in shock.
I was never advised to drink protein drinks, which shocks me reading you all did it.
I delivered at 30 weeks, after having found TTTS at week 20.

Hang in there...we are all here for you!

 

I am so glad that I found this forum! I feel a lot less anxious since seeing all your replies and getting all your advice. My husband and I thank you all for posting so much good information. I'm surprised that my peri (soon to be ex-peri) thought it fit to put us on such an emotional roller-coaster. I'm taking it one day at a time and hopefully, ttts won't happen to us but at least we'll know what to look for and quit jumping at shadows. My feet are up, my hubby is shoving boost down my throat, and I'm going to try to keep a positive outlook on everything and just try to enjoy this pregnancy. (minus the puking part)

Thank you everyone! I hope that someday I can return the support that you have given me!