Acute twin to twin transfusion syndrome?

Acute twin to twin transfusion syndrome?

by Pippa
(UK)

Hello I was wondering if have any info on Acute twin to twin transfusion syndrome, the chronic version is when it happens around 26weeeks, acute is at the end as i found out, i was booked in for a planned c-section, had a scan 10 mins b4 this everything showed to be fine, 20 mins later I lost both my boys, I was 38weeks and 4days. Do you have further info on the acute version, or know any1 who will. please. No 1 makes u aware of these things. Its supposed to be 1 in a billion I need to know more.

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Acute twin to twin transfusion syndrome?

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Nov 14, 2011
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I lost one Twin at 35 weeks NEW
by: Twins Mum

Hi I had acute ttts i was due to be induced and they could only find one heartbeat so had an emergency c section with me it was the larger twin who died.

Mar 08, 2011
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love
by: mumma

To everyone that has suffered the loss of a baby way to soon our love that is in our hearts for them will always keep them with us.. there is no easy way to get your life back..it just gets better with time..Its been 4 years since my angles were born and it still kills me but i am lucky to have my other 3 girls and that is what i live for....a mothers love never ends

Jan 22, 2011
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Lost twin at 34 1/2 weeks unexpectedly
by: Anonymous

I am just in tears to read this, especially the ones that made it to 36 and 38 weeks. You must have thought you were smooth sailing to have made it so far. I know the utter disbelief and shock that you would have felt too. We had an emergancy c-section at 34 1/2 wks. when at one of our routine non-stress tests/ultrasounds our OB suspected TTTS and transferred us to aspecialist. Our recipient passed away on the admitting ultrasound from heart failure and our surviving donor was struggling, so that is why we had a c-section. We are awaiting a meeting with the maternal fetal specialist to analyze everything, but did not do a postmortem. Our son who passed was 6 lbs, 11 oz 19 inches, and survivor was only 4 lbs., 5 oz, 18 1/2 inches. I have a feeling that this was going on for a couple of weeks, since our ultrasound 2 1/2 wks earlier was fine with their weights. It is so hard to do "what ifs". Our OB did not refer us to a specialist at any point b/c he had said it was a great pregnancy, but now I play "rewind" to wish that a weekly ultrasound could have caught this in time.

Jan 19, 2011
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Lost babies at 36wks
by: Esther

Loosing a baby breaks your heart.
We lost our beautiful twin boys just two months ago. They were 36wks. Had a scan just seven days before and all was fine. Chronic tts was suspected twice although awaiting STILL awainting meeting with consultant to disscus cause of death. We did not have a postmortem could not bear the thought of my babies being cut. Suspect they will blame accute tts.

William Andrew 6lb 15oz and Jack Thomas 5lb 1oz
robbed what else can I say

My heart and my love goes out to every woman that has lost a child regardless of circumstance x x

Jan 17, 2011
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TTTS
by: Donna

I had my identical daughters in May 1996. They were delivered at 37 weeks by emergency C-section after i had gone into labour. One was stillborn (Kamara) and the other fighting for her life (Danika). A post-mortem on Kamara revealed they suffered acute TTTS and Kamara (my recipient twin) had passed away approx 12 hours before delivery. Danika was given 72 hours to live. She is profoundly disabled with multi-complex needs and is life-limited. She is like a newborn baby in a teenagers body and dependent upon me for EVERYTHING. She has no voluntary movement, no speech, is completely wheelchair bound etc. All through TTTS.. - my heart goes out to all those who have lost thier babies through this devasting 'disease' x x x

Nov 25, 2010
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Ethan & James
by: Anonymous

I lost my twin boys to TTT six weeks ago at 20 weeks. I gave birth to them and buried them last week. I'm completely devastated and not sure how to get through this.

My love to you all x x x

Nov 15, 2010
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Hi Pippa
by: Anonymous

I am so sorry to hear the news, it is so incredibly sad that we do not receive enough care from where we expect it.
I cried when i read your post about our babies all together in Heaven.
Hope your ok.
xxx

Nov 02, 2010
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Update!!!
by: Pippa

We have just recieved a letter from the solicitors this morning stating the hospital accept full responsibility and had they delivered them at 36 weeks on the balance of probalbilites they both would have survived without injury.

Anonymous; Wish i could say something to comfort you, all i like to think is at least their (our boys) are together. xxx

Oct 21, 2010
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so sorry
by: mumma

i am so sorry Anonymous, all my love goes to you and your family. God bless your little girls...

Oct 19, 2010
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TTTS
by: Anonymous

Hi
Really sorry for your loss, lots of love and hugs to you.
We lost our twin girls 8 weeks ago to acute twin to twin transfusion and it really is heartbreaking.
xxx

Oct 13, 2010
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my little angles
by: mumma

i lost my baby's at 21 weeks. We know wright from 10weeks that they Had ttts but know one told us how bad it was, there was 2 weeks size difference between them. The last exams was the worst day, they went though everything then it came to there heart beats and there was nothing the lady would not let me see the screen, but i know. I then had to Carrie my angles for two weeks before they induce me, i have a very hard time with the pain i still fell it has been 3 years but it still feels like it was yesterday .....

Oct 13, 2010
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Sep 21, 2010
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Thank you for your kind messages
by: Pippa

Our boys would be 2 on December 29th, we now have a little girl who is 6 months she is amazing, although it is still so hard to get through any and every day. I miss them so much. Even though our little girl makes me light up inside every time she smiles, i still feel soooooooooooo empty and think why aren't her brothers here!

Aug 20, 2010
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Acute TTTS
by: Anna In Sydney Australia

I'm so sorry for your loss. My girls were delivered by emergency c-section in December 1998. My pregnancy was diagnosed as high risk from the beginning because my twins were monoamniotic twins. They were scheduled to be delivered at 35 weeks because of the risk of cord compression due to entanglement. I was having regular scans and heart rate checks every 48 hours. Everything was going smoothly. At 34 weeks and 5 days I went in for a check and only one heartbeat was found. I went in for an emergency c section and woke up to find out both my babies had died. I later found out that an acute TTTS had occurred and that one twin had been dead for about 24 hours and the other died shortly before delivery.

Back in 1998 I could not find much information on the acute form of the disease, a lot of information was available for the chronic form and I found very little information on the acute form. I once came across an article that stated that the acute form only happens during delivery. I knew this was NOT true. Every now and then I google acute TTTS to see if I can find out any more information about the disease and tonight was the first time I came across this site. I don't know how I feel, but there is some comfort in knowing that I am not alone.

My girls will be 12 years old in December and I still think of them every day.

My thoughts are with you and your family.

Jun 10, 2010
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TTTS at 24 weeks
by: Carrie Earls

I am so very sorry for your loss. We lost our first twin 24 hours after an ultrasound that showed our babies were fine. I was leaking fluid, but both twins had extra in their sacs. TTTS wasn't a consideration since both babies had plenty of fluid and weighed 3 oz of each other. There were absolutely NO signs of TTTS until it was too late.
I am on the raising twins website if you are on there and ever need someone to talk to.

May 23, 2010
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Acute TTS after 30 weeks
by: Kristina

My twin pregnancy was going on absolutely swimmingly - had an ultrasound at 30 weeks and all was good... at the next ultrasound at 33 weeks one of my boys had died and the other was delivered by emergency ceaser that morning and spent 6 weeks in NICU but is now a very healthy baby boy. I always thought that nothing could have been done but now I wonder if the Doctors really did do everything they could - I;m trying to find out if they were negligent not giving me an ultrasound for 3 whole weeks when it was such a high risk pregnancy. My son is now 7 years old and I am still asking the question - What if?? It's very sad and I am sorry for anyone who has lost a baby - it's something you just never ever 'get over'.

May 09, 2010
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total loss for words
by: brandy

my children are not twins, they are 3 years apart and I could'nt imagine my life without them. my sister is almost 31 weeks with ID girls and has been told they have ttts. baby A is not doing very well and she was told to expect her to be very ill if she makes it. Im trying to find out all the info I can to help her thru this. It's been only a year this month that my other sister had to bury her daughter of unknown problems. I just dont know what to say or how not only her but the rest of our family would cope if the worst possable should happen. Im so sorry for your loss, words can not explain the emptyness or hurt a mother feels for the loss of her child.

May 07, 2010
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TO; 04 may 2010-Anonymous
by: Pippa

WHAT !?!

May 04, 2010
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TTTS
by: Anonymous

have you tried the TTTS foundation? They have been worried about my boys with this and I called them and they were fantastic! they sent me a book on TTTS and call to see how they are doing. If you have not tried them I would. I hope everything works out!

May 01, 2010
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Acute version of TTTS
by: Des Moines, Iowa

Dear Pippa,
I'm so very sorry for your loss. I also lost twin boys due to the acute version of TTTS. It was in 1999, eleven years ago yesterday, in fact, at 36 weeks. We had known early on that the Patrick and Christopher were monochorionic identical twins. Our doctor told us about TTTS, but we had no way of knowing we were only being told about the more common chronic version of TTTS that is manifested by discordant body weights. At every ultrasound we knew it was good news that their weights were so close. We thought we were out of the woods for TTTS.

The last month of my pregnancy was such an ordeal due to complications: cholistasis, gestational diabetes, anemia, and the overall physical strain of such a big pregnancy. At my 35 week OB visit I implored the doctor to schedule delivery telling her my body couldn't take any more. She said: "We don't deliver just because mom's tired of the pregnancy." She shamed me, in other words. At the 36 week appointment we were told once again that the boys were doing great and delivery was scheduled for a few days later. But the next day I went back to the doctor because they hadn't been kicking. We were told they were both dead. I'm leaving out details, but it's all still so vivid to me. It was devastating. The following day we returned and labor was induced. I wasn't allowed to have an epidural because my blood test results were so abnormal due to previously mentioned complications. It was a very painful delivery with back labor, all the while knowing they were already dead.

They were beautiful. Christopher weighed 5 lbs 15 oz, Patrick was 5 lbs 7 oz. They were perfect. They brought so much love and joy in such a short time. Their deaths were a terrible, avoidable waste of two lives.

Our doctors were not forthcoming about the cause of death even though the condition of the placenta showed clearly that an acute TTTS event had occured. They acted as if what happened was unheard of and impossible to predict. Weeks later someone in the Mothers Of Twins group I had joined mentioned a TTTS group to me and I contacted a woman in Alaska who was the organization's president. I was shocked to learn of the acute version of TTTS which is less common than the chronic version, but when it does occur often affects late to full term babies like mine. I confronted my doctor (a perinatolgist) asking her why she didn't tell us about the acute version. "Because we can't scare patients like that." I was so angry. I told her that we sought the care of specialists so that we'd have the benefit of the best information to make decisions. She said we wouldn't have done anything differently had we'd known. Absolutely not true.

I'm heartbroken to hear that such deaths are still occuring. Again, I'm deeply sorry for your loss.

Feb 10, 2010
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Sorry for your loss
by: Ann

We lost one of our girls to acute ttts, I had an ultrasound at 24wks, everything was fine, then at 27 weeks baby B was gone and baby A very sick. Weighing 1lb 8oz we got to bring her home after an 80 day nicu stay weighing 4lbs 11oz, we've been home for 9 wks and she's weighing 12lbs now.
I can't imagine loosing her too, I feel your pain in wanting what we can never get back and just not even letting the have a chance at making out side the womb. My heart goes out to you.

Feb 02, 2010
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ttts
by: Anonymous

so sorry to here of your loss.

Jan 07, 2010
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Lost twins
by: Sad

My daughter lost her twin boys at 22 weeks , the specialist wanted to see it go to level three before he would do surgery . They were gone four days later at the next ultrasound , Im not saying its anyones falt but i wish they had sat us down and exsplained how fast thing can change ,its sad twin to twin transfusion but also sad to feel so alone even at the doc appointments .

Nov 21, 2009
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LOST TWINS
by: Anonymous

my daughter just lost her twin boys @ 22 weeks.she had several ultra sounds.we havent been told what happened but she had all the signs of ttts.we did go see a specialist and he said for us to return in 2weeks. she didnt make it.i ask at the appointment about ttts. the dr. seemed like it wasnt a big deal. just too much fluid.if we had only been told more!! now she feels like its all her fault.what happened?

Sep 17, 2009
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acute TTTS in UK
by: Lisa M

I hate to sound so critical...but what the heck were your UK doctors thinking?!! Allowing you to go past 38 weeks!! Being pregnant with identical twins sharing a placenta had to be known as soon as you had your first ultrasound! I was monitored every 2 weeks from the moment it was determined I was carrying ID twins sharing a placenta - since at any point in this kind of a pregnancy, TTTS can develop!! EVERYTHING was fine (barely any difference in the twins weights, sizes, etc) up until the 37th week. At week 35, I was seen every week... I was told I would NOT be allowed to go past 38 weeks - even if everything was 100% OK - why?! SINCE why chance TTTS developing after 38 weeks... At my 37th week appt, it was determined Baby B was all of a sudden 1.5 pounds heavier (the last check he had only been a few ounces heavier!). I was told I would need to be induced that night (it was mid- afternoon). I was induced and able to go through with my birth plan of FULL/TOTAL natural delivery (no drugs!) - I was first mother of twins in 11 years (at GW University Hospital, Wash, DC) to do so! Indeed my boys were different weights Baby B was 5.14 lbs and Baby A was 4.1 lbs. Baby A went into NICU to get a blood transfusion (since obviously Baby B took more than just the food from Baby A - he also took more blood). Within a few hours Baby B went into NICU since his blood was too thick (too much hemoglobin - it needed thinning out). Within 2 days Baby A's blood levels were perfect; however it took 8 days for Baby B. BUT, Baby A stayed in hospital longer, since he was weaker and wasn't eating as well (needed feeding tube). After 13 days, he came home (Baby B took 8 days). Final result, Baby A is pale, Baby B still is reddish color. Eventually they will be same weight and color - but at exactly 8 weeks right now, I am just thrilled they are happy and healthy and gaining weight quickly (Baby B is now 8.9 and Baby A is 6.9).

I am soooo sorry for your loss...BUT, I am so shocked that your UK doctors allowed you to go past 38 weeks. EVERYTHING that I have read indicates that pregnancies like this MUST be monitored and should NOT go past 38 weeks....due to possible devastating results like you had...

Apr 22, 2009
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acute ttts
by: BridieJo

I am so sorry to hear of your loss, it is just so very very tragic. I have now 14 month old ID girls who had acute TTTS. I was scanned every week from wk 5 and also had weekly heart monitoring. I displayed NO symptons and nothing showed in the scans (performed by a TTTS specialist). I had a routine scan at 34 weeks and there it was, the acute form. I had my girls 15 minutes later. It happens that quickly. I was told in no uncertain terms that hours later they would not have made it. The thing with the acute form is that it can happen that quickly and more often than not, the outcome is not positive. I know how very very lucky our girls are.

Apr 14, 2009
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TTTS
by: Libby

TTTS is diagnosed through it's symptoms. If it does not exhibit any symptoms it may be hard to diagnose, therefore acute TTTS would be quite difficult to find by someone who is not specialized in TTTS. I am very sorry you lost your children to TTTS. There is a foundation at fetalhope.org that I found very helpful with my questions.

Apr 02, 2009
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how absolutely devasting for you!
by: Amy

How on earth could the TTTS go undetected right up until the very end? And you went full term? I can't even imagine what you are going through. I am so so sorry for your loss. I hope that someone can help you with answers to this.

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