Twin to Twin Transfusion Syndrome

In 2002, my beautiful twin baby girls were stillborn due to Twin to Twin Transfusion Syndrome (TTTS). This article presents the facts I’ve learned since then.  Much about TTTS is still unknown. Over the years, I have asked and spoken about TTTS to many health professionals and still too many don’t quite know about it. TTTS is a condition more people need to know about -- especially expectant multiple birth parents and the medical profession.


When I was pregnant, twin to twin transfusion syndrome was diagnosed during our routine 19 week scan. The doctor only told us that: TTTS is very rare, not much is known about it, and we were likely to lose one or both babies. TTTS has a high mortality rate.


We demanded answers and action, and had to go to another hospital to find a doctor on call who knew about TTTS.  She removed 1.25 ltr. of excess amniotic fluid. Days later we had another amnio reduction. We were monitored every 2 – 3 days with wonderful medical care.


Our babies did not show any signs or symptoms of the TTTS affecting them at all. The aim was to get our girls to a viable age, but as things progressed it seemed much safer to leave them in my womb and continue strict monitoring. At 27.3 weeks, after another flawless ultrasound two days earlier, our girls’ little hearts just stopped beating just like that.


Just like that my life as I knew it was changed forever.

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TTTS is a complication of the shared placenta, and therefore only affects  identical twins or higher order identical multiples. The twins transfuse their blood supply through connecting blood vessels in their placenta. TTTS can affect babies any time during pregnancy; if diagnosed before 20 weeks the risks are higher.  Often TTTS is detected by ultrasound of excess amniotic fluid in the sac, and different sized babies.


What I’ve learned:

  1. There is not much information in pregnancy or twin books about TTTS
  2. Information is available on the internet, but few sites are dedicated solely to TTTS: TTTS Foundation and Twin to Twin Transfusion Syndrome Australia Inc
  3. While I was pregnant, connecting with other families who were or had experienced TTTS  helped me hang on to hope
  4. After my babies passed away, connecting with families who had also lost babies to TTTS brought me comfort and  support
  5. TTTS laser surgery to separate the connecting blood vessels in the placenta is now available in QLD and NSW (Australia)
  6. Laser surgery does not guarantee safety of the babies
  7. Some twins do not have the same signs and symptoms of TTTS – my girls never had the common sign of size difference.
  8. TTTS is like a ticking time bomb that can go off any time even if all signs and symptoms look good
  9. Dr Delia (founding doctor of the laser surgery) recommends drinking protein shakes  – I did, and it made me feel like I was doing something to help my babies, and they were born at good sizes for their age
  10. Some twins seem to have a very bad case of TTTS and survive, while some seem to have a very good case and do not survive.
  11. It most definitely is ok to ask questions, ask for a second opinion and or demand information and treatment if it is available.


I look forward to sharing more with you about what I have learnt both personally and professionally about pregnancy and infant loss.


Comments (11)

Sharon
Said this on 05-06-10 At 04:08 pm

My girls are the fifth generation of twins in my family, but the only ones to both survive. My own twin died in utero, my grandmother had stillborn twins and my great grandmother’s were premature and died. My girls are nearly 9 years old now. When I was pregnant, TTTS was diagnosed but I was not told. At my 27wk hospital visit, an ultrasound was ordered. The technician called someone in – all I heard was "immediate delivery”. I was told there was absent diastolic flow through one of the cords. But I didn't deliver immediately: instead, I had daily ultrasounds. I was told that, depending on the result of the daily scan, I’d either be allowed to wait till the next day’s scan or have the babies that day. My girls were born by emergency c-section at 32w & 2d. Some time after my pregnancy, I was told it was TTTS. Looking back I'm glad nothing was said about TTTS at the time as I would have stressed even more, but I agree: more needs to be done to support and educate families, healthcare staff and the community. Thanks for sharing, Trudi.

Laura
Said this on 02-10-10 At 04:51 am

I was diagnosed with TTTS at 24 weeks’ pregnant. I’d been having a good pregnancy with no complications. The day I hit my third trimester, I entered hospital after a few contractions: I was admitted to try to stop them. TTTS was diagnosed, and I was told that the difference between the twins was severe, so there wasn’t much hope for them. The doctor said my only hope was laser surgery. I had the surgery but began contracting again. I was determined to hold the babies in as long as I could. The contractions stopped and was discharged but had to have daily ultrasounds, and in case I went into labour I wanted be near a NICU that could handle babies so young. I kept the babies in until almost 28 weeks. That night I felt that something was wrong but had a portable doppler and could hear heartbeats. On our way to the last ultrasound, I came to terms with the fact that my life was about to change forever. I made myself take in and remember the last few peaceful moments with my boys. I watched the ultrasound technician’s face and I knew. She said "There isn’t a heartbeat". We thought that maybe our donor twin had passed away, and asked if it was him and she said "No, neither baby has a heartbeat". That was the moment my world turned upside down. My boys passed away Sept. 9, 2009. It is comforting to know that someone else knows what I am going through. Thank you for sharing and allowing me to do the same. 

elizabeth dircks
Said this on 10-06-11 At 10:45 am

My niece is in the hospital. She was just told she has TTTS. What I have read is not good. She is only 18.

Tara
Said this on 02-10-11 At 11:15 am

There is hope… I was diagnosed at 16 weeks with TTTS, and was scheduled for laser surgery at 19/20 weeks. The surgery went well, and the medical staff were great. Within a week the "stuck" twin was already catching up in weight. I am now 35 weeks’ pregnant and so far everything is well. To all the mothers out there: my sincere condolences for your losses. I wish more then the best for all of you. I just wanted to let other "to be twin mothers" know that there is hope. Be strong for yourself and for your babies: nothing is stronger then a mother’s love

Said this on 16-04-13 At 12:13 pm

My son and daughter-in-law were diagnosed with TTTS today at 20 weeks - both identical twin girls had heartbeats - one better than the other -they have had a great pregnancy up until this point - they are scheduled to leave for Cincinnati tomorrow for evaluation for laser surgery on Thursday a.m. - have read and read info. on internet but don't know much else - any other information you could send our way would be helpful - we were told that she is stage III  Thanks so much.

Jennifer
Said this on 26-02-12 At 06:44 am

I am a twin and a survivor of TTTS. I was the donor, giving too much blood to my sister.. I almost died. I had to spend two weeks in the hospital because of the blood loss

Sarah
Said this on 01-05-12 At 09:57 am

My identical twin girls were diagnosed with TTSS at 15 weeks and I had to wait 16 weeks until I could have the laser surgery done. They both made it through the surgery, but a few days later at check up the recipient (our Hadleigh) had died.  Her sister Leighton was born at 32 weeks and has consistent but curable health issues. I feel lost- I grieve for my daughter, but my heart goes out to you who have lost both. I am happy but jealous of those of you who got to keep both. 

charmaine
Said this on 09-05-12 At 03:21 am

I lost my two girls due to TTTS. I went for a routine ultra sound at 23 weeks and the tech noticed right away that Sara, the stuck twin, had no fluid around her but Erin was swimming in fluid. T was sent to a hospital were they did the twin to twin tranfusion procedures. Before they did the procedure they did many ultrasounds, internal and external, and found that my cervix was thinning due to the excessive amount of fluid that was around Erin. They did and emergency cerclage and also drained 3.5 liters of fluid off of Erin. When the doctors were all done they said both the girls had strong heart beats and everything went well. As soon as I was out of surgery I was experiencing contractions which they said was very normal and they gave me some drugs to stop or slow down the contractions. 11 hours later, my water had broke and I was in full blown labor. Both my girls did not make it: they were just too small. Sara was 1 pound and Erin was 1.1 pound. After looking at my placenta after they were born, they said the surgery did work however I had so much excess fluid on Erin they thought that may be what caused me to go into labor. I miss my girls so much and have a need to also have another baby. We lost our girls April 7th 2012. Every day has gotten a little easier: I still have some really bad days but the good days are more often then the bad. My heart also goes out to all the women that lost there babies.

Lisa
Said this on 21-10-12 At 12:47 pm

I am a grandmother who just lost twin boys 2 weeks ago.  My son and daughter in law are coping but it is just so hard.  24 weeks and TTTS came on so suddenly that they tried the laser surgery but both babies were lost.  I knew nothing of this problem and have read a lot now, but I think doctors need more training.  

Erika
Said this on 05-01-13 At 03:02 pm

I wasn't even diagnosed with TTTS. I asked my obstetrician if it might be TTTS because of all the fluid but he said not a chance as it's so rare. I gave birth at 37.5 weeks to two big, but severely compromised babies. The first out was the donor twin, not breathing...I knew her little body was being passed behind me, no one spoke, never has a birth been so quiet. I knew I just had to get the 2nd one out quickly. Fabulous team ensured I had a safe, controlled natural birth of 2nd daughter who came out swollen, purple and screaming her lungs out. Thank God for the incredible paediatrician in the corner who had rapidly intubated no. 1 baby and let me know she was breathing before she was whizzed off to the NICU. Today, they're 6ft, highly intelligent, stunning girls about to study Science at university. I was so incredibly lucky, but it could have been a different story. I make sure that everyone with twin pregancies are aware of this condition and that it's not quite so rare as is made out...as we all know! Interestingly, I read Trudi's comments about protein shakes - I craved meat and fish whilst pregnant so had high proteing diet. I wonder if this helped?
I'm so sorry for everyone's losses; losing one child must be unbearable, so the pain of two I don't even want to imagine.

Said this on 05-02-13 At 03:53 am

I wasn't diagnosed with TTTS. My daughters were born at 30 wk + 6 and I didn't find out about TTTS till 2 days after their birth. My daughters spent 3 months in hospital but are now 5 years old and have caught up tremendously. I agree that TTTS needs to be more widely discussed so that expectant parents are more aware of the complications and can do ever thing in their power to help their unborn babies.

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