What is TTTS?
TTTS is a disorder of the placenta in which one baby (the receipient) has more blood and amniotic fluid than the other baby (the donor). It is caused by a difference in the blood pressure of ID twin babies, who share a placenta. The blood has a tendency to flow to the baby with the lower blood pressure, leaving the baby with higher blood pressure with less. This is most often seen in monochorionic, diamniotic twins and effects an estimated 6000 babies a year. If the disorder begins in the first two trimesters, it is likely that one or both of the babies will not survive without medical interferrence. About 80% of babies effected by TTTS die, largely due to failure to diagnose or adequately treat the problem.
The diagnosis of TTTS can be made due to several different factors. This can be seen in the following posts:
Bill: We were diagnosed with probable TTTS at 20.5 weeks gestation, confirmed at 21 weeks. At that point our boys had a 1 week size difference. By 22 weeks when we had the fetoscopic laser surgery on the placenta they were up to 2 weeks size difference.
Michelle: I had an ultrasound at 23 wks and everything looked normal. I had another at 28 wks and the babies measured 1lb 13 oz & 2 lb 10 oz. So my TTTS developed sometime between 23 & 28 wks. After the second US, I brought the difference to the Dr's attention. He did another US himself and hemmed and hawed. He asked me if I knew the sexes yet and when I said they were both girls, he remarked that that could be bad. I learned very little from him but called a cousin who is a delivery nurse and she gave me the hard facts, that this was probably a problem with the placenta giving more to one baby than the other, it only happens to ID twins, and most of her experiences were with babies who had died or were delivered early with major health problems. I never knew the name of the disorder until after they were born.
Nikki: The main complications we had was that baby B was "stuck", meaning she had no fluid around her (shrinkwrapped in her sac) so she couldn't move much at all. This is actually how TTTS was diagnosed for us. We were originally told that our twins were monoamniotic because they couldn't see the second sac. So, I would put a flag out to all parents who are told that they have monoamniotic twins.. This is a big indicator of TTTS and it usually turns out that there are indeed two sacs.
The treatments can vary from monitoring, to serial amneiosentisis to laser surgery:
Bill: By 22 weeks when we had the fetoscopic laser surgery on the placenta they were up to 2 weeks size difference. By 32 weeks they were back within 1 day of each other in size.
Michelle: I was hospitalized a few days after diagnosis, at 28 wks for preterm labor, stayed 4 days in the hospital on mag sulfate, and eventually was able to go home on terbutaline. I had Dr appts twice a week for an ultrasound, non-stress test and measurement of the amniotic fluid (AFI) I was told that as long as the smaller baby continued to grow they would let the pregnancy continue normally, but if she stopped growing they would have to induce as she would definately die inside me, and would have a better chance of survival outside than inside me.
This whole time period was touch and go & I'm glad I didn't realize the gravity of the situation then. I felt I was far more concerned than the doctor and kept a chart of what they each weighed and the discord between them. At 34 wks they weighed 2 lbs 14 oz & 4 lbs 6 oz with a 34% discord between the two. I was told that they consider anything less than 25% discord normal, so I knew it definately was not normal and was pretty scared at that point. I monitored movement of both babies several times a day and was told to come in if I felt no movement or generally if anything didn't feel right.
I had begun to really educate myself and had been to the NICU at 28 wks, so I knew what to expect. Actually, Alexandra, the smaller baby, was a little bit bigger than we expected, so that was a pleasant surprise. I was told that the larger baby would suffer worse medical problems, because of the extra blood, whereas the smaller, if she didn't stop growing inutero, would probably be small but healthy. We were told no matter how early they were born to expect them to stay in NICU until their due date, which when I delivered would have been five weeks.
Nikki: The complications for the babies hadn't shown up in our case yet (thankfully). The problems from TTTS are that the bigger baby who is getting all the blood would eventually die of heart failure because of trying to pump too much volume with every beat of its heart. Baby B, who is shunting all the blood, would eventually die of lack of nourishment. Suprisingly though, when TTTS occurs later in pregnancy (late enough for the babies to be delivered), the smaller baby is usually the healthier of the two.. The heart problems are the most difficult to deal with once the problem is there.
There are two methods of treating TTTS.. The most effective is the surgery because it treats the cause of TTTS.. Dr. Julian De Lia is the doctor and he now practices in Chicago. The surgery is still in the "research" phase though De Lia has it all routine now. It takes about 17-25 minutes to actually get in there and get the job done. The other method is serial amniocentesis (spelling most likely wrong).. This is where they draw fluid off of the bigger baby every 2 or 3 days in hopes of keeping the uterus stable.. Sometimes it even seems to help the situation in that the smaller baby (for reasons unknown) actually starts doing better. The problem here is that couples who think the surgery is their best option should have absolutely NO invasive action taken prior to the surgery. The reason is that every time the uterus is punctured for the amnio, scar tissue builds and sometimes bleeding into the fluid occurs.. Dr. De Lia needs absolutely clear and uncontaminated fluid and a smooth surface to operate with. We figured that if the surgery was not successful then we could try the amnio. Luckily for us, the surgery seems to have been 100% effective. We were diagnosed with TTTS when I was 16 weeks along.
I am not sure what the babies were weighing at the time, but I do know that they were 2 weeks apart in gestational size and the gap was increasing. We are now right on track with Linzie (Our bigger baby A) weighing around 1.5 lbs, and Abby (Donor baby B) weighing about 1.25 lbs. They are each around 12 inches long. They are still about 10 days apart in size, at 26 weeks gestation.
The medical side effects can be seen even before delivery:
Jamie: This also happened with one of our identical twins. She had hydrocephalus (water-on-the-brain) and ventriculomegaly. It became fairly bad, but never too severe. It was the result of TTTS and it actually went away at about 33 weeks. They told us it would NOT go away before birth and that she would need a shunt in her brain to her stomach. It did go away and she is normal and fine. It only happened in one of the twins though.
The birth, of course, can have many outcomes depending on the treatment applied and it's effect:
Bill: They were born via c-section (failed a non-stress test) at 37.5 weeks and weighed 6 lbs 2 oz and 5 lbs 14 oz.
Michelle: At 35 wks, the Dr felt it was safe to stop the terbutaline and knew that I would deliver very soon afterwards as I was 2cm dialated, & 90% effaced since 28wks. I gave birth the next day and Alexandra weighed 3 lbs 10 oz & was 17 ", while Jacqueline weighed 5 lbs 12 oz & was 19.5". This was still about a 35% discord.
Many twins regardless of whether TTTS is involved, spend time in NICU (neonatal intensive care unit).
Bill: They didn't have to spend any time in the NICU although they were watching blood sugar levels closely for a while.
Michelle: The apgars were 4/6 for Alexandra and 5/8 for Jacqueline. They were both wisked away to NICU. Jacqueline was bright red as an effect of all the excess blood. She had so much extra blood in her that she was unable to oxygenate it by herself. The first few days there was no improvement, and this was the *worst* part of the whole thing. She had a C-pap stuck in her nose to provide oxygen for several days and she HATED it. She cried, yet there was nothing I could do for her. We were unable to hold or breastfeed her and it was agonizing to watch her, and know that it was in her best interest. On the 4th day she graduated from the C-pap, to a hood that surrounded her head. After six days she moved to a small tube running beneath her nose and we were able to hold and feed her. She was taken off oxygen all together the next day and came home eight days old.
Alexandra, as predicted, was perfectly healthy. She was tiny and looked very white for a few days. The best way to decribe her is to picture a little old person who is very thin and wrinkly with a huge head! The NICU staff referred to her as a "feed and grow", which was actually the best kind of baby to have in NICU. I was able to breastfeed the first day and we brought her home when she reached 4lbs at 14 days old.
The future outcome can vary from both being normal and healthy, to slight differences in developement, to severe handicaps and also death of one or both babies:
Michelle: Now they are 13 mos and still just over 2 lbs apart. Alexandra weighs about 17 lbs and her sister is just over 19 lbs. Jacqueline's physical developement has been faster than Alexandra's. She crawled, stood, and walked first. But interestingly enough, Alexandra usually dominates Jacqueline, who rarely fights back. I know this is personality, but we intentionally gave the smaller baby the "stronger" name thinking she would need the strength. Boy were we wrong!=~)
Jamie: The other twin had a severely deformed club foot. They did an ultrasound at birth and an MRI and it was normal. She had a small brain abnormality which they said was the equilalent of having long earlobes or something, meaning that it was totally benign.
Other relavent sites well worth a visit:
- An article, appearing in Twins Magazine, written by a doctor performing and detailing the treatments: http://www.twinsmagazine.com/mar96pre.html
- The TTTS Foundation contains lots of statistics and information concerning TTTS and is located at: www.tttsfoundation.org
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