Can mono/di twins have abnormal high fluid levels WITHOUT TTTS?

Update

(21 weeks pregnant with mono/di twins)

So a Dr. called me back about the ultrasound results and found out what the techs were talking about....

They said the fluid (in the uterus) is verging on abnormal for too much.

No measurements for fluid in each amniotic sack or anything recorded, just 'borderline'.

Um, this freaks me out a bit. I have no idea if the twins have equal fluid or not.

I DO know that neither twin is stuck and I saw the membrane on the ultrasound.

What does this mean? Is it possible for mono/di twins to have equally too much amniotic fluid, or does this point to amniotic discordance?

I don't see my perinatologist until next THURSDAY. The regular OB I talked to has no idea, and I think my regular Dr. won't, either.

If anyone knows how to contact Dr. DeLia I would love to have the information.

 

QUOTE(desolation_anonymous @ Jul 22 2008, 08:13 PM) [snapback]890222[/snapback]
Update

(21 weeks pregnant with mono/di twins)

So a Dr. called me back about the ultrasound results and found out what the techs were talking about....

They said the fluid (in the uterus) is verging on abnormal for too much.

No measurements for fluid in each amniotic sack or anything recorded, just 'borderline'.

Um, this freaks me out a bit. I have no idea if the twins have equal fluid or not.

I DO know that neither twin is stuck and I saw the membrane on the ultrasound.

What does this mean? Is it possible for mono/di twins to have equally too much amniotic fluid, or does this point to amniotic discordance?

I don't see my perinatologist until next THURSDAY. The regular OB I talked to has no idea, and I think my regular Dr. won't, either.

If anyone knows how to contact Dr. DeLia I would love to have the information.

How frustrating! I don't have any answers for you but I am thinking good thoughts for you and your boys!

 

I believe TTTS is defined by an oligohydramnios (low fluid) AND polyhydramnios (high fluid) sequence. If they didn't tell you that one had high fluid and one low fluid, then it may not be TTTS. They need to be able to tell you that they measured the fluid in each amniotic sac and where the fluid may be abnormal. I would call your dr again - ask if there is low/high fluid in each of the sacs, and, if you can, get the answers on the other TTTS stuff - like visible bladders, cord dopplers, growth discordance.

If they are BOTH high/normal (totally possible, btw) - I think you are ok for TTTS, but I don't know what else that could mean, probably just to keep an eye on your cervix because too much fluid can cause pressure on your cervix and maybe cause PTL, but it doesn't have to!

also, the normal range for amniotic fluid is a maximum vertical pocket between 2 and 8 cm. Mine were both always on the low side. Some are always on the high side, but the important thing is that they are close to equal - not trending to low AND high!

good luck!
jenny

 

Dr. DeLia's e-mail and phone # are on the twin to twin transfusion foundation website. You can also do a general search for him and the hospital where he practices will have several links. FYI though..before you call/e-mail him he will want to know certain information ( I was caught off guard and not fully prepared for his call :FIFblush: When I e-mailed him I left him my phone # (he prefers to speak with you directly), and he called me from his home at 0700 Memorial day He is absolutely wonderful. Anyway-he took a verbal history from me and he wanted to know my nutritional status (weight/height), how often I was being seen, when my last scan was, the MVP of fluid for each baby, my cervical length in cms., and the wt. of each baby in grams. At the time I only knew that the fluid levels were equal, the weights of babies, and that my cervix was "ok" with no changes. He recommended finding out the fluids, wts., and cervical length at every scan. ( I don' get regular cervical measurements though, they visualize it with regular u/s). After my following appt. I sent him an e-mail to update and we agreed that everything sounded great so I would only need to contact him if anything changed. He has now asked me to update him at 32 weeks for recommendations on delivery etc.

Are you still working? That was something he wanted to know as well and was very happy to hear that I had stopped at 16 weeks. I would also just go ahead and start drinking your 3 high protein drinks now too-I have been doing that and my boys have been measuring a week ahead the whole pregnancy. Plus I have found that it is a good habit to get into because now I can't really eat much and am having tummy trouble because of overcrowding. It is definately worth making the call. He was a wonderful source of information and he also was able to gently remind me that my chances of actually developing twin to twin were fairly low. He told me how many mono/di twins were born a year, and out of those how many actually had the syndrome (it was much lower than I imagined). In the beginning I was obsessed and I constantly worried about it so hearing that from him (plus all of the great care I am getting at my OB) really helped put me at ease. Good luck and I would ask to know the answers to those questions. If they don't have the information they need to do another u/s. I can't believe that "borderline" is a medical diagnosis!!

 

I asked my peri about this because I had low fluid with my singleton and was concerned that could happen with my mono/di twins also. I was confused because with my son they kept telling me that a measurement under 5 was considered low, but with the twins they kept bringing up the under 2/over 8 situation. My peri said that they are actually different fluid measurements that they do to test for TTTS versus just high or low fluid levels. That is probably why they didn't have a measurement for you and said it was borderline. My peri also said it is very hard to do the other fluid level test on mono/di twins because the dividing membrane is not a straight line so what looks like one baby's fluid might be the others. He said that is why they just keep an eye on it visually. As I said, I did have low fluid with my son that was detected around 33 weeks. We kept an eye on it with u/s a few times a week since it was borderline and my doctor delivered him at 37 weeks since he considered that full term. I'm not sure if borderline high fluid would be treated differently.

 

I think that if your OB suspects a problem that is so very serious he would have called the peri and gotten you on in. A borderline reading may just be normal for your babies?? If I were you and so worried, I would call the peri myself and move my appointment up!

 

QUOTE(marisa55 @ Jul 23 2008, 06:58 AM) [snapback]890932[/snapback]
I asked my peri about this because I had low fluid with my singleton and was concerned that could happen with my mono/di twins also. I was confused because with my son they kept telling me that a measurement under 5 was considered low, but with the twins they kept bringing up the under 2/over 8 situation. My peri said that they are actually different fluid measurements that they do to test for TTTS versus just high or low fluid levels. That is probably why they didn't have a measurement for you and said it was borderline. My peri also said it is very hard to do the other fluid level test on mono/di twins because the dividing membrane is not a straight line so what looks like one baby's fluid might be the others. He said that is why they just keep an eye on it visually. As I said, I did have low fluid with my son that was detected around 33 weeks. We kept an eye on it with u/s a few times a week since it was borderline and my doctor delivered him at 37 weeks since he considered that full term. I'm not sure if borderline high fluid would be treated differently.



yeah my Ob said with twins they look for the maximum vertical pocket and measure that from top to bottom.

 

QUOTE(mstofko21 @ Jul 23 2008, 05:46 AM) [snapback]890840[/snapback]
Dr. DeLia's e-mail and phone # are on the twin to twin transfusion foundation website. You can also do a general search for him and the hospital where he practices will have several links. FYI though..before you call/e-mail him he will want to know certain information ( I was caught off guard and not fully prepared for his call :FIFblush: When I e-mailed him I left him my phone # (he prefers to speak with you directly), and he called me from his home at 0700 Memorial day He is absolutely wonderful. Anyway-he took a verbal history from me and he wanted to know my nutritional status (weight/height), how often I was being seen, when my last scan was, the MVP of fluid for each baby, my cervical length in cms., and the wt. of each baby in grams. At the time I only knew that the fluid levels were equal, the weights of babies, and that my cervix was "ok" with no changes. He recommended finding out the fluids, wts., and cervical length at every scan. ( I don' get regular cervical measurements though, they visualize it with regular u/s). After my following appt. I sent him an e-mail to update and we agreed that everything sounded great so I would only need to contact him if anything changed. He has now asked me to update him at 32 weeks for recommendations on delivery etc.

Are you still working? That was something he wanted to know as well and was very happy to hear that I had stopped at 16 weeks. I would also just go ahead and start drinking your 3 high protein drinks now too-I have been doing that and my boys have been measuring a week ahead the whole pregnancy. Plus I have found that it is a good habit to get into because now I can't really eat much and am having tummy trouble because of overcrowding. It is definately worth making the call. He was a wonderful source of information and he also was able to gently remind me that my chances of actually developing twin to twin were fairly low. He told me how many mono/di twins were born a year, and out of those how many actually had the syndrome (it was much lower than I imagined). In the beginning I was obsessed and I constantly worried about it so hearing that from him (plus all of the great care I am getting at my OB) really helped put me at ease. Good luck and I would ask to know the answers to those questions. If they don't have the information they need to do another u/s. I can't believe that "borderline" is a medical diagnosis!!


Thank you!

I will start protein drinks now. Unfortunately I am still working and can't afford to quit unless I have to...

They don't tell me what the fluid levels are on each, they were just 'visualizing' it, and apparantly they didn't record it during the ultrasound. I'm really frustrated about that. I do know that one weighed 155 grams and the other 144 grams. (sigh) writing down mostly to remember...

Thanks, I emailed him, I'm hoping he'll call back...

 

QUOTE(marisa55 @ Jul 23 2008, 06:58 AM) [snapback]890932[/snapback]
I asked my peri about this because I had low fluid with my singleton and was concerned that could happen with my mono/di twins also. I was confused because with my son they kept telling me that a measurement under 5 was considered low, but with the twins they kept bringing up the under 2/over 8 situation. My peri said that they are actually different fluid measurements that they do to test for TTTS versus just high or low fluid levels. That is probably why they didn't have a measurement for you and said it was borderline. My peri also said it is very hard to do the other fluid level test on mono/di twins because the dividing membrane is not a straight line so what looks like one baby's fluid might be the others. He said that is why they just keep an eye on it visually. As I said, I did have low fluid with my son that was detected around 33 weeks. We kept an eye on it with u/s a few times a week since it was borderline and my doctor delivered him at 37 weeks since he considered that full term. I'm not sure if borderline high fluid would be treated differently.



Thank you so much... I guess that explains why they didn't do the other fluid level test. Thanks for letting me know what you experienced!

I really don't want to wait until next Thursday to talk to my perinatologist, wish me luck....

 

Update...

I emailed Dr. De Lia and he called me back! He was very nice, positive, and helpful. Unfortunately I did not have enough information for him, as I did not have measurements for the deepest pocket on each amniotic sack, or the babies' weight (which I was given, but was wrong- he thinks they gave me the heartrates instead!)

He said that usually too much fluid is caused by some transfusion, but if at 21 weeks there is the first sign that anything is odd, and their sizes are almost the same, that could be positive. Of course, I could not give him enough information for him to give a truely informed decision...

He advised bedrest and boost or ensure shakes with protien. I'll start with the ensure shakes today. I can't do bedrest as I work and need a note from my Dr (who I'm still waiting to hear back from) but I WILL stay horizontal on my time off, as suggested..

I am so grateful to have spoken with him, he truely is a pioneer and a kind and informed doctor and I am amazed he takes the time to talk to and help women and families that aren't his patient. I am so thankful i heard about him from the TTTS foundation and here.

Still waiting to hear back from my perinatologist from Kaiser.

 

QUOTE(desolation_anonymous @ Jul 23 2008, 05:52 PM) [snapback]892310[/snapback]
Update...

I emailed Dr. De Lia and he called me back! He was very nice, positive, and helpful. Unfortunately I did not have enough information for him, as I did not have measurements for the deepest pocket on each amniotic sack, or the babies' weight (which I was given, but was wrong- he thinks they gave me the heartrates instead!)

He said that usually too much fluid is caused by some transfusion, but if at 21 weeks there is the first sign that anything is odd, and their sizes are almost the same, that could be positive. Of course, I could not give him enough information for him to give a truely informed decision...

He advised bedrest and boost or ensure shakes with protien. I'll start with the ensure shakes today. I can't do bedrest as I work and need a note from my Dr (who I'm still waiting to hear back from) but I WILL stay horizontal on my time off, as suggested..

I am so grateful to have spoken with him, he truely is a pioneer and a kind and informed doctor and I am amazed he takes the time to talk to and help women and families that aren't his patient. I am so thankful i heard about him from the TTTS foundation and here.

Still waiting to hear back from my perinatologist from Kaiser.


He is awesome-that is how all doctors should be but unfortunately they are few and far between these days. I don't know if you have Safeway in SF or maybe Von's but I recommend their brand of high protein shakes. They taste the same and have all of the same ingredients but are only $5.00 a 6-pack all of the time. The Boost and Ensure really are expensive and the cost adds up. I have been drinking them since about 15-16 weeks and at 3 daily it runs us about $75.00 a month for the generic brands. I know the Ensure is at least 2-3 dollars more and the Boost between 4 and 5. I am gald you are feeling better-keep on that doctor/peri person though and get your answers. Keep us posted!

 

He is awesome-that is how all doctors should be but unfortunately they are few and far between these days. I don't know if you have Safeway in SF or maybe Von's but I recommend their brand of high protein shakes. They taste the same and have all of the same ingredients but are only $5.00 a 6-pack all of the time. The Boost and Ensure really are expensive and the cost adds up. I have been drinking them since about 15-16 weeks and at 3 daily it runs us about $75.00 a month for the generic brands. I know the Ensure is at least 2-3 dollars more and the Boost between 4 and 5. I am gald you are feeling better-keep on that doctor/peri person though and get your answers. Keep us posted![/quote]

 

I delivered mono-di boys in January and there were times that Baby B had "borderline" high levels of fluid according to his deepest vertical pocket - he had up to 9. My Baby A always had over 3 and sometimes as much as 6 - so I was never close to the TTTS levels. It did worry me, but my MFM kept a very close eye on my boys with u/s every 10 days until 28 week and then u/s 2xweek with BPP 1xweek and NST's 1xweek. I think it is so important for there to be close monitoring with mono-di twins.

Also, you have to remember (I always tried to tell myself this) - the measurements are only as good as the ultrasound tech doing them - and there is always a margin of error - especially the farther along you get, it gets more difficult to get a good pocket of fluid without any body parts or cord in it - and that is the only way the measurement is accurate.

Good luck - keep everyone updated!

 

QUOTE(mama23boys @ Jul 24 2008, 07:35 AM) [snapback]893219[/snapback]
I delivered mono-di boys in January and there were times that Baby B had "borderline" high levels of fluid according to his deepest vertical pocket - he had up to 9. My Baby A always had over 3 and sometimes as much as 6 - so I was never close to the TTTS levels. It did worry me, but my MFM kept a very close eye on my boys with u/s every 10 days until 28 week and then u/s 2xweek with BPP 1xweek and NST's 1xweek. I think it is so important for there to be close monitoring with mono-di twins.

Also, you have to remember (I always tried to tell myself this) - the measurements are only as good as the ultrasound tech doing them - and there is always a margin of error - especially the farther along you get, it gets more difficult to get a good pocket of fluid without any body parts or cord in it - and that is the only way the measurement is accurate.

Good luck - keep everyone updated!



Wow, thanks for your story! That is AWESOME! I am so happy to hear things turned out for you that way! I will also talk to my peri about more monitoring depending on what I can find out today (Kaiser right now, 2X a month, once with him once with OB)

Did he do the monitoring at 28 weeks because of the fluid levels, or because it is standard in his practice with mono/di twins?