Worried about TTTS

We just got back from our 16 week u/s - they did find a membrane between our twins, but possibly only one placenta.

However, one is measuring about a week behind the other (skull, abdominal) - so we're being referred to a peri for a closer look.

So, obviously they're worried about TTTS - I've been reading a lot on the internet - not all great, unfortunately. I know it could be normal that the weights are off, and they didn't say anything about amniotic fluid (which I will ask the peri).

So, does anyone have any experiences to share? I know I should take it easy, so I'll work on that.

Thanks,
Jenny

 

There are quite a few moms on here with experience with TTTS who know a lot more about the disease than I do so you should get some good advice. Even though I am no expert, here is my story although it is different from yours.

18 week U/S showed twins to be same weight. At 20 week U/S the doctor noticed a difference in the fluid levels and bladder sizes. He recommended watching it twice weekly and diagnosed Stage I TTTS. Since then (I will be 26 weeks tomorrow), their fluid levels have fluctuated from 2 to 4 for the donor and 6-10 for the recipient. By the grace of god they are not showing any other signs of TTTS at this point. No fluid in or around the hearts or abdomens, dopplers seem good and their sizes have been within a few ounces of each other. I am praying that things stay at Stage I until 34 weeks which is when they said they would deliver although from everything I know of this disease it can progress extremely rapidly at any point in your pregnancy so keeping in tune with your body and your doctors is key.

I would suggest doing research at the TTTS foundation website to be prepared for what you should ask your peri at that first appointment. I think the most important thing is to see if he can confirm one placenta. From what I know you can't have TTTS if you have two placentas so you would want him to be looking for another reason for the weight discrepancy. Also, I know that weight alone doesn't diagnose TTTS so I think you need to get answers on those other things - fluids, bladders, hearts, etc. Until your appointment I would suggest drinking the Boost High Protein drinks 3 times a day - I have been doing it and while I don't know if it is the reason we have stayed at Stage I, I know it certainly can't hurt them. I will be thinking of you and hoping like heck that it isn't TTTS. If it is, make sure that they monitor you at least weekly if not more often. Good luck and please keep us posted.

 

thanks for the good info - anyone else been through this?

jenny

 

I have ID boys -- and although we haven't had any indication of TTTS - I do go for weekly u/s to keep an eye on it. I know there are several great ladies on here who have personal experiance with this. Like the pp, I would also encourage you to go to the TTTS foundation web-site. Their BB has been a great source of information. If you are anything like me -- knowledge is power -- it made me feel better just to feel like i "knew" what i should be worried about, and what i shouldn't, and what was the best accepted proticals under different situations, so I could be an informed advocate if needed. I do know from what i've read that a fluid decrepancy is usually the first sign, so that is a key question to get answered at your next apointment. Sorry I don't have anything more helpful...but i'm sure some of the other twin moms who have had experiance with TTTS will be by soon to give you lots of good advice!

 

For TTTS I think they are really more concerned with fluid levels than the size of the babies. If they have an unequal placental share, that could account for the weight differance as well.

We were diagnosed at 18 weeks when they saw that Connor was wrapped in the membrane and had very little fluid.

Either way, just to be safe I would up your protein intake because I firmly believe that it helps.

Soon2Bmotherof 3: We stayed at Stage 1 until until they were delivered at 34 weeks! I truely believe that an increased protien diet and diet shakes played a huge part. I started that when we were diagnosed, but got sick of it around 30 weeks and shortly after I stopped, things started to progress again.

 

We were diagnosed with TTTS at our first u/s at 19 weeks. I had my first amnioreduction (where they take a bunch of fluid out of the recipient twin's amniotic sac) that day and then another at 25 weeks. I got monitored weekly by u/s and had growth scans every 2 weeks. I ate like a crazy person as well because I wanted to make sure that my little twin got all the nutrients she needed. She was not only the donor twin for TTTS, she also had a 2-vessel umbilical cord so she was getting less food in two different ways. I was never hungry from week 19 on since I was eating so much. Now that the recommendation from Dr. DeLia (the TTTS expert) has started coming out that increase your protein intake I am beginning to suspect that our fantastic TTTS outcome was related to my diet. We made it all the way to 35.3 weeks before delivering. Sierra was perfectly healthy, although small. Ainsley had typical recipient twin problems with maturity and needed to go to the NICU for 9 days for breathing problems but she was released as healthy as any other baby. Other than their difference in size, you'd never know that they had problems in the womb.

Since your doctors have noticed the difference in the size of your babies, make sure you get monitored by u/s at least every other week from this point on. Weekly would be better if they are specifically watching for something. One of the symptoms of TTTS is difference in the amount of fluid in the babies' sacs so that is an important thing to find out about at your next appointment.

 

QUOTE(tulip1981 @ Jun 20 2007, 02:10 PM) [snapback]300334[/snapback]
Soon2Bmotherof 3: We stayed at Stage 1 until until they were delivered at 34 weeks! I truely believe that an increased protien diet and diet shakes played a huge part. I started that when we were diagnosed, but got sick of it around 30 weeks and shortly after I stopped, things started to progress again.


I am glad you said that - I have been getting a little too relaxed lately since things have been progressing so well and I have been noticing the discrepencies creeping back up again. It's a good reminder that I need to stay on top of things like the drinks and resting until the girls are here safely!

Jenny - please let us know how you make out after you see the specialist and how your fluid levels look.

 

I also have TTTS survivors, diagnosed stage II-III at 19 weeks. I had one amnio at 20 weeks which led to a complete rupture of my membranes. My little miracles held on another 8 weeks 3 days before they were born at 29 weeks. You have gotten great advice. Visit the TTTS Foundation (www.tttsfoundation.org), contact the founder of the TTTS foundation (Mary Slaman-Forsythe) and request a copy of the book. Drink the Boost High Protein (make sure it has 15 gr of protein) 3 times each day, and do bedrest as much as possible. Make sure you are getting AT LEAST WEEKLY ultrasounds. Contact Dr. DeLia (his number is easily found at the foundation) -- he will consult with ANY woman who is diagnosed with TTTS without charge. He is a wonderful man! Learn everything you can and keep the hope -- there are more and more survivors every day. I will be praying that yours are among them!!! If you want to talk more, you are welcome to PM me.

 

our little ones were confirmed ttts by placenta pathology, there was slight fluid difference and almost a pound weight difference between the two but they did just fine. I definately recommend staying on top of all your appointments and visiting the site mentioned but know also thst if sixe differenc is the only factor you have a good chance of everything going smoothly. definatey ask about nst's in the future though