Terrified! TTTS at 18 weeks

Yesterday at 18 w 3 d I had an ultrasound where they believe they are seeing the beginning of TTTS. Baby A has the ocean to swim in and Baby B is curled up in a little ball in the corner. Two weeks ago there was just a small size descrepancie, 6 oz baby A and 5 oz baby B. I go back in a week to get another scan. In the meanwhile I am terrified. Is there anything I can do in the meantime (sleep on my left side, drink gallons of water, anything????) to help. At this early stage is there anything they can do for my girls? Any one go through an early diagnosis of TTTS and have a positive outcome?

 

Hang in there...there are definitely some great stories on Twinstuff about early diagnosis of TTTS and good outcomes. We were diagnosed with TTTS at 27wks 3days and our boys came two days later and are doing GREAT! Are you linked in with a high risk OB? They can do all sorts of stuff if needed like amnioreduction (I almost had this done but my water broke as they were prepping for it) which can sometimes reverse the fluid distribution. I read somewhere that it was helpful for TTTS to rest and eat a lot of protein. You can do this!

 

:hug: I do not have any experience with this but I know there are some TS members that do-I am hoping they chime in!!
I think bed rest, protien and a high risk OB are all steps in the right direction.
Hang in there sweetie!! and keep us posted please! :youcandoit:

 

:hug: I'm sorry you are worrying about this, but I'm glad to hear they seem to be keeping a close eye on it.

 

:hug: Have you ever gone to the TTTS website? It is an awesome forum for support and there are A LOT of success stories on there! I don't have personal experience with TTTS, but I know there are a lot of moms on here who have success stories to share. :hug:

www.tttsfoundation.org

 

I don't have any experience about ttts, for now and I hope i don't have to worried for that! I already read some stories with happy endings!!!!
There are many treatments they can do, so if they are watching you (I am pretty sure they do), everything will be ok!!!!!

Keep posting!!!!!! Good luck!!!!

 

It is very unsettling. I have done research on my end, so I know there are things they can do. Today I called my reg. OB (diagnosed by my peri) and asked the nurse if there was anything I could do while waiting for my U/S next week. Drink more water, take more vitamines, sleep on my head,,, anything. she basically told me that all I can do is wait for my appt. next week and "try to not stress out, it isn't good for the babies" duh, I would love to not stress out if I had anything else to educate myself or do to feel like I have one iota of control.

 

http://www.twinstuff.com/forum/index.php?showtopic=120325

My success story is on here. Hang in there. We are all here for u!

 

They won't tell u this since there are no conclusive studies...drink boost 2-3 times a day. I credit it with turning mine around and it is recommended by The most well known ttts dr.

 

You should share your story on the twinstuff complications section under ttts success stories.

 

After my second u/s at 18 weeks, I called Dr. Julian DeLia to get more info about TTTS and about how the doctors should be handling a mono-di pregnancy. I knew I needed to see a Peri or MFM and he agreed. He was very encouraging to speak with and so very knowledgable on the subject. You can call or email him and he will respond.

It sounds like your OB is still handling your care? I would really recommend transferring to a high risk OB, peri, or Maternal Fetal Medicine specialist.


Info on Dr. DeLia:


Dr. Julian De Lia, MD, FACOG, FACS is medical director of the International Institute for the Treatment of Twin-to-Twin Transfusion Syndrome at Wheaton Franciscan - St. Joseph in Milwaukee, Wisconsin. You can contact Dr. De Lia by email at [email protected] or 414-447-3535

 

mama23boys

I am under the care of both actually. All scans are done at my Perinatologists and my follow up next week in there. So far all my lab and progesterone shots have been at my OB. Just a waiting game and I am not very good at waiting.

 

I'm sorry I did not have this but it looks like you are getting some good info. :hug:

 

My girls were diagnosed with TTTS at 17 weeks. There was a size discordance and a difference in amniotic fluid and something off with their doppler blood flow on the donor baby. We had ultrasounds once a week and weekly appointments with my OB as well as my Peri for the rest of the pregnancy. We did growth scans every 3 weeks. When the discordance reached 26 percent at 24 weeks they started to say "just 1 more week" and then the next week they'd say the same thing and so on. At 33 weeks I went in for a scan and Baby A (donor baby) had reached 30% size discordance, flow was off, Recipient baby had a abnormally high amount of fluid. They wanted to bring me back in 3 days for another check (34 weeks exactly) and if things hadn't improved babies would be born. The day I turned 34 weeks I woke up to my water breaking at 4am. The girls were born 4 hours later at 8:04 and 8:06 am. Baby A was 3 lbs 13 oz and 15.5 inches long and extremely pale Baby B was 5 lbs 4 oz and 17.25 inches long and bright bright red. They spent 2 weeks in the NICU and came home 2 days apart from each other. At 5 months old (3.5 months adjusted) they are now 11 lbs and 12 lbs respectfully and doing beautifully.

 

I'm sorry I can't help either. I just wanted to say you'll be in my prayers. What a terribly scary time for yoU!

 

Thank you everyone for youf your kind thoughts and usefull information. I did actually email Dr. DeLia last night and he meailed me back asking for our phone number. Hopefully, I can get some usefull information from him. Does anyone know if taking two prenatal vitamines vs just one and extra folic would help or hurt anything? Right now I am taking one with extra folic, but a babe cannot survive on folic alone . Still just feel a strong urge to DO something. I drank a ton of water yesterday and the boost and it seemed to help as well as a few Boosts. Little Mary who has been felt in only one spot seems to have moved to a new spot, so maybe she is stretching out and exploring a little..... Hope, hope, hope....

 

Cincinnati Childrens Hospital Medical Center has a Fetal Care Center that does laser surgery on TTTS babies, too. I was diagnosed at 28 weeks with it. I did not have the surgery, though. I did have 3 amniotic fluid drains, though. Lots of fluid and protein are the best things you can do. Keep us posted! You are in my prayers!

 

If the Boost has extra vitamins in it, don't take a second prenatal. My peri wasn't a big fan of Boost (too much sugar and lots of chemicals), so I used protein powder from a natural food store. If you do that, you can put a few scoops of powder in whatever you're eating or drinking and you don't have to worry about getting too many vitamins... or artificial food colors. Hang in there... lots of water, rest on your left side, etc.

 

Well a few things. Dr. DeLia did not call last night, but I am not discouraged. He is a busy man, so I am sure I will hear from him soon.

Idril: I will probably switch to protein shakes vs. boost just because I was spilling glucose at my last ob visit.

Another question for all. Is it entirely probable that I stay is a watching phase 1 thru out the pregnance, gets no worse??? Maybe gets better on its own.???

 

Yes mine did...u should read the stories on the link I posted.

 

Hi there, I was just diagnosed three days ago, and had laser surgery two days ago with Dr.Ramen Chmait in LA. They said it was a success, but I'm still terrified, I'm reading all these awful stories. Need good outcomes too please!

 

Hello Twinkerbelle,

I was also diagnosed almost 13-years-ago with TTTS at 18-weeks, I was 27-yrs old. (on forum because I'm pregnant with my 5th, I know I'm crazy) Also, the medical field has advanced so much, so how my TTTS pregnancy was treated will certainly be different to today's TTTS pregnancy. At any rate, I had a positive outcome. So here's my story.

My AFP test came out abnormal. I thought for sure something was wrong with the baby, didn't know I was having twins yet. At 17-weeks had my 1st ultrasound, where TTTS was suspected. They waited a few weeks to do another ultrasound, and sure enough, it was verified I had TTTS. Identical twins are suppose to have a 10-15% difference in measurements, fluid, etc. There was a difference of 47% with my girls. They admitted me to the hospital for a few hours for an amniocentesis. Sierra had soooo much amniotic fluid, and Sabrina barely had any. They extracted a 2-liter bottle of fluid from Sierra's sac, thinking that Sabrina would then have room to create more fluid. They released me later that day. Well around 2am, I developed a high fever and was having convulsions, and quickly returned to the hospital. Apparently, I was hemorraging from the site (bellybutton)where the amnio was performed. They ended up admitting me to the hospital, where I remained until I gave birth. In the meantime, they pumped me with steroids and all kinds of medication. They wanted to get me to at least 32-weeks, which is when the babies lungs are fully developed. Meanwhile, they were still performing amnios on me every 2-days, (with demoral) a 2-liter bottle was be extracted from Sierra's sac, and again doctors kept hoping Sabrina would create more fluid. I had also developed pre-eclampsia with the TTTS.

Everyday, I begged to go home, I hated being in the hospital. People think you get so much rest when your in the hospital, so not true. My vital signs were being checked every 2-hours or so, they had me strapped to two baby monitors. That was the worse! It would take about 15-minutes to find the girls heartbeats, then I'd have to go to the bathroom, then again the whole process started of trying to find the girls heartbeats. The doctor also had informed me I was getting very sick, although I didn't feel sick at all. I had developed fluid in my lungs, and also cardiomyopathy in my heart. Basically all my organs were shutting down. I told the doctor that I didn't care, all I cared about was getting to 32-weeks. But the doctor just told me "we'll see."

Fortunately, the doctor didn't let me go home. Apparently, having a lot of amnios can cause your water to break, and go into labor, which is exactly what happened to me. I had been in labor all night, and didn't know it. (1st pregnancy) At the same time, they were giving me Magnesium to stop the labor pains. Well around 8:45am my water broke. The nurse came in to check my cervix, and realized Sierra's foot was hanging out. (Sierra was breach, Sabrina was not) In the meantime, my doctor along with other Doctors had a pre-scheduled delivery of triplets. Next thing I'm screaming to the nurses that I have to push, while still in my room. The nurses are telling me not to push! There yelling at the other nurses to get my doctor in here right away, I'm delivering babies. Next thing I know, I'm being rolled out to the delivery room, with a nurse sitting on top of me, her hand inside of me, pushing Sierra back inside of me. There telling me if Sierra comes out, Sabrina would follow, and she wouldn't survive in the birth canal.

I get into the delivery room, their telling me "we need to do an emergency c-section right now" a nurse starts shaving me for the c-section, then I hear the doctors saying their is "no time for that" and then a gas mask is placed on my face. It all happened so quickly, they didn't even have time to prep my husband for the delivery.

I delivered the girls at 28-weeks, Sierra weighed 2 lbs 8 oz and Sabrina was 1 lb 4oz. Sierra was in the NICU for 8-weeks, and Sabrina for 11-weeks. Sierra who was actually the bigger twin, was in more danger in the beginning, she was so swollen and red from all the blood she was pumping. Sabrina was soooo small and soooo active. I remember them always sedating her because she kept moving, therefore burning the few calories she was receiving.
Of course we were extremely worried. I thought, their is no way a 1 lb baby can survive. Keep in mind this was 13-years ago. But they did, they just couldn't keep growing and survive inside of me. Besides needing to finish developing, they didn't have any other medical conditions. Of course, they had IV's and were being administered all kinds of meds. After 3-4 weeks, we saw they were getting better, and on their way closer to coming home. The nurses kept telling us to take lots of pictures, we thought they were crazy. We were so sad and frightened. But they said your girls will be fine take pictures so you can remember how small they were, and so you can show them pictures.

The doctor later told me that if my water hadn't broken, because of my health deterioting, he was going to deliver the girls. A few days after delivering the girls, all my organs were back to normal.

I had a nurse come for the first 3-months every 2-weeks and check on them, just to make sure they were gaining weight. Not sure if this is provided to all premature babies, but I was definately glad to have the nurse help me and give me a lot of advice.

Both girls also came home on apnea monitors, which monitors their heartrate and breating. I felt very fortunate to have those monitors. The doctor prescribed them for the whole 1st year, so happy to have those hooked to them. I was so paranoid of sids. They were also on a lot of different meds.

At any rate, the girls are doing great, they are both in middle school. They both have ADD, which is something the doctors told me can occur because they were so premature. Which by the way, I have found has it's pros. But other than that, there fine and doing very well. They are identical twins, but the first few years, Sierra was always the bigger twin, now both girls are the same height and weight. There into shopping, Justin Bieber and all the normal teenage girls stuff.

I feel so blessed and thankful that my girls survived, and that they are doing well.

Imagine, this was 13-years ago. I've heard they can do some sort of laser surgery while the twins are in utero. The technology is so much better now.

I'm sure everything will work out for you and your baby girls. I know what your going through, and know it's hard not to worry. But hang in there, and have faith that everything will work out. Obviously you want to carry to full-term, but even if you don't, remember the doctors and the technology that is available today is so amazing.

By the way I had 2 more children, (2006 and 2009) and they were perfectly healthy singleton pregnancies. No complications at all!!
Hopefully, the 4th pregnancy and 5th (last) pregnancy is a healthy singleton.

I'll keep you in my prayers, and I hope my story eases your worries a little bit.

Let me know if you have any questions, or advice, and please keep us posted.

Take care!

 

I hope things are going well for you. I know it is terrifying. I think you're doing the right thing by getting in touch with the experts. I was going to recommend that you do that as well as call Mary at the TTTS Foundation. She founded the Foundation after dealing with TTTS and can be a very good source of information. I believe someone already gave you the web address (there is a phone number there).
I would continue the protein drinks (I did Atkins Advantage because it doesn't have the high sugar content), but better than that is getting lots of natural protein. Eat lots of greens, lean meats, cheese... Also, keep drinking water. Aim for a gallon a day. And, rest.
There is, unfortunately, not a lot you can control, but as others have said there is a lot of reason for hope.
INSIST on frequent monitoring. At least once/week by a specialist.

I delivered my boys at 26w5d due to an acute, rapidly progressing case of TTTS (I was diagnosed and I delivered on the same day). At my 24w5d u/s they were perfectly fine. I was not a candidate for laser surgery and my docs felt like amnioreduction would be futile. My water broke right before I had my c-section. Today my boys are wonderful, perfectly healthy miracles.

Keep the faith and I wish you all the best.