Twin to Twin Transfusion Syndrome
- 27-05-10
- Categorized in: For Family and Friends, For Parents, For Professionals, RED ALERT
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.
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:
- There is not much information in pregnancy or twin books about TTTS
- Information is available on the internet, but few sites are dedicated solely to TTTS: TTTS Foundation and Twin to Twin Transfusion Syndrome Australia Inc
- While I was pregnant, connecting with other families who were or had experienced TTTS helped me hang on to hope
- After my babies passed away, connecting with families who had also lost babies to TTTS brought me comfort and support
- TTTS laser surgery to separate the connecting blood vessels in the placenta is now available in QLD and NSW (Australia)
- Laser surgery does not guarantee safety of the babies
- Some twins do not have the same signs and symptoms of TTTS – my girls never had the common sign of size difference.
- TTTS is like a ticking time bomb that can go off any time even if all signs and symptoms look good
- 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
- 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.
- 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.
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.
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.
My niece is in the hospital. She was just told she has TTTS. What I have read is not good. She is only 18.
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