Bad news at OB..

abbzy85

So since my babies are measuring a week apart, one at 1lb 11oz and the other at 1lb 4oz, they have reason to suspect TTTS. The babies' growth will continue to be monitored but now they are having me go to a Peri at the hospital to have it done there. Of course at this point they haven't diagnosed it yet but its just gonna weigh me down with worry while I wait. Even more surprising is the fact that the Drs now think they share a placenta because earlier on I remember being told that there were too. Oh well.. now it's a waiting game.

Anyone per chance have experience being watched for TTTS?

ncsubride

GL keep us updated.

mmbench

Yes.  I was placed on bedrest at 24w and transferred to a maternal-fetal medicine specialist at a larger hospital.  I was monitored twice weekly.  Luckily, it never got worse.

My twins were born at 34w due to fluid leakage.  One was 2 lbs 13 oz and the other 4lbs 9 oz.  They were in NICU for 16 days. No long term issues due to the size difference.

abbzy85

mmbench:

Yes.  I was placed on bedrest at 24w and transferred to a maternal-fetal medicine specialist at a larger hospital.  I was monitored twice weekly.  Luckily, it never got worse.

My twins were born at 34w due to fluid leakage.  One was 2 lbs 13 oz and the other 4lbs 9 oz.  They were in NICU for 16 days. No long term issues due to the size difference.

I'm glad your girls did well. Do you think it's weird that I haven't been put on bedrest? I think their position was that nothing specific that I do can help the babies if one is taking blood from the other. 

littlewonders

Hi, my girls had TTTS. I might be overreacting a little bit, being that I almost lost both of my babies to the disease, so bear with me and don't be too freaked out (easy to say, I know).

First of all: Growth restrictions / discordance in twins are not all uncommon and do not need to be a sign for TTTS. That's the good news. If that is the only "sign" they are seeing right now, it is very well possible that it not TTTS. There could be other issues (placenta insufficiency, etc), but they aren't typically as serious as TTTS and your babies might just be born with some growth discordance, but otherwise perfectly healthy.

Secondly: The fact that they aren't sure whether or not your babies are sharing a placenta alarms me. You absolutely need to be seen by a peri, which it sounds you will be from now on. When do you have your first appointment there? Make it soon. When I was a borderline stage 1 (they weren't sure and said it could go either way), I had u/s every few days.

Do you know if they have seen a difference in amniotic fluid levels? Did they do doppler studies to check for blood flow?

I really don't mean to freak you out, because by reading your post, you could be completely fine. However, TTTS is an incredibly dangerous disease, if left untreated the mortality rate for both twins is 90%. And even with treatment, survival rates for both twins are only around 50% ... mostly because of late diagnosis. Also, it progresses very quickly. We went from borderline stage 1 (not sure if we have it or not) to full-on stage 3 being rushed into surgery (one of the babies was showing signs of heart compromise) in 2 weeks.

Lastly, the fact that you are already 24 weeks is very good news. Sometimes the only way to save TTTS babies is to deliver them, or after having the laser surgery you could go into PTL (which is what happened to me). I was diagnosed at 17w, had surgery at 18w and started PTL at 19w. I had a LONG way to go.

 About the bed rest, different TTTS centers have different opinions about it. Google Dr. De Lia or the TTTS Foundation, they talk about the potential benefits of nutritional supplementaion and bedrest. Were you are at, I probably wouldn't worry too much about it, although I think drinking the Boost might help.

Sorry this is so lengthy, as you can tell, it hits close to home for me. Check out my blog (we were diagnosed in February) and page me here or leave me a comment on my blog if you want to talk further. Keep us posted.

kelliwill

I am so very sorry you are dealing with this.  Hopefully things will be okay with your babies.  I am a little surprsied that they are just now saying that they think the babies are sharing a placenta.  Were you seeing a peri this whole time?  We were told we had twins at our 11 week first u/s and told two scaks and two placentas.  Two weeks later when we met with the peri he said, no two sacs, one placenta and identical twins.  Two very different things.  Since that time I have been seeing the peri every two weeks.  I am in California and my peri is assocaiated with Stanford.  At each appt. he looks for signs of TTTS, and so far we are good.  I have also gone and had a fetal echo for this as well, just to check as it is a risk and agiain so far so good.  It is my understanding that TTTS can occur at any time, but often they see it earlier than 24 weeks (not that I am an MD but just what I was told), so hopefully you are in the clear.  GL!! 

abbzy85

I think that the problem is that I am on my third Dr. The first Dr. only saw one little baby and one heartbeat at the 5 1/2 week sono and the 7 1/2 week sono. We even asked if there were two because twins run in my mom's family and the Dr. said there was only one. I then went to another Dr. during the summer because my husband and I were going back to Fl to be with family and there I saw my aunt who is an OB. That is where they finally saw the twins at 12 weeks. I knew for sure there were 2 sacs but I don't recall if they determined two placentas or not. This is why I'm left with finding out now that they are probably identical. I have never had any problems so I was not recommended to see a peri thus far. Now looks like I'm going to be seeing one..

kelliwill

Again, so sorry you are dealing with this and sorry you have had to switch doctors.  I think that by seeing a peri you will get better care and more precise answers.  A twin pregnancy is not the saem and a peri is really someone you SHOULD see.  I know my peri is really on top of things and was very clear with me that they are identical and at each appt. he compares their growth to each other, their fluid, as well as checks to make sure that there is a membrane between the two.  He is trained to do this.  I had to switch Dr's at 12 weeks when we found out it was twins, because I was seeing a general practitioner and they don't do twins.  That was where we had our first u/s and got mis-informed that their were two sacs and two placentas.  Two weeks later when we saw the peri, he said, "they are not equipt to tell you that."  Personally I feel VERY good seeing a peri as well as my OB.  In my case, my OB will deliver, but my peri does ALL my ultrasounds and checks my cervix during those u/s as well and will say when to deliver if we don't go on our own (he says 37 weeks due to thenm being identical).  Other MoM's I know who only see an OB, it is their office practice to have a peri look at their u/s's and consult with them, because twin pregnancies are different, higher risk, and it is hard to tell what is going on in the u/s.  Hopefully all will go well and I think that it is really a good sign that you have had NO problems up til now.  You and your babies are in my thoughts and prayers!

 

seattlestef

I just wanted to ditto pp's that seeing a peri sooner rather than later is important and also wanted to share my situation. Your babies are most likely completely fine, but I always like to play it safe. My twin girls had seperate sacs/seperate placentas, but by about 14w they had merged. They were still seperate, but looked like one on the ultrasound so if they hadn't seen them seperate before they wouldn't have known. Does that make sense?

My baby B was IUGR - always measured much smaller than her sister and at our 20w level II ultrasound the peri was able to identify a velamentous cord insertion. This basically means that her umbilical cord wasn't hooked up to the placenta right so she wasn't getting as much nutrients as her sister. If you haven't seen a peri yet, your normal OB might not have been looking for this. I had weekly level II ultrasounds to make sure she continued to grow. The plan was induce labor if she completely stopped growing, but luckily she never did. When I was induced at 34w5d she was only 3lbs 12oz and her sister was 5lbs 5oz. She is still smaller than her sister, but is working on catching up, meeting all of her milestones and is extremely healthy!

Luvie13

No advice.  Just wanted to let you know you and your little ones are in my thoughts.  Hope everything turns out ok.

maria15288

My babies were diagnosed with TTTS at 18 weeks and my baby B was 2 weeks behind at that point and only got further behind until they were born at 36 weeks and my baby b was the size of a 32 weeker. If they suspect TTTS then there is only 1 placenta in there. Don't stress too much about it especially since you're further along and and there is only 1 week difference a lot of twins are 1 to 2 weeks difference and they are fine and make it to 37 weeks with no problems as long as fluid levels are normal both babies will keep growing great. Make sure you find a good Peri.