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[edit] Twin-to-Twin Transfusion Syndrome or TTTSThere is Always Hope A diagnosis of TTTS is a shock to parents who have been joyfully expecting an uneventful pregnancy. Like many medical mysteries, the cause and development of TTTS is not yet fully understood by even the leading doctors in the field of TTTS research, but more and more is being learned every day. Huge advances in the ability to analyze and diagnose TTTS have been made over the past couple of years. New laser techniques pioneered by Dr. Quintero (Tampa) and Dr. De Lia (Milwaukee) are showing amazing success when compared to more traditional methods of combating the disease and there are several programs around North America and Europe that are currently working hard to understand the syndrome better so that a better treatment plan can be.prescribed. Unfortunately, most doctors practicing today were trained before these advances were known, and the currently available statistics on TTTS do not reflect the most recent successes, either. As a result, few doctors are actually current on the newest techniques for diagnosing and treating the disorder, and this results in some less than accurate assessments of the babies’ chances of survival. . Until the general medical community is familiar with the advances in the field, and the literature reflects the newer, more positive statistics, patients may need to, advocate for themselves and their babies and look a little harder to find the right course of action for them. There are new procedures and protocols available today to improve your babies’ chances of surviving TTTS. Today, more than ever, there is reason for hope. What is Twin-to-Twin Transfusion Syndrome? Twin-to-Twin Transfusion Syndrome (TTTS) is a disease of the placenta. It affects only monozygotic ("identical") twins sharing a single placenta. As the placenta develops, the blood vessels form in such a way that vessels from one umbilical cord connect up with vessels from the other. This causes a sort of "short circuit" between the babies. It can create a transfusion situation where one baby does not have an opportunity to process fluid coming to it because the fluid immediately gets sent over to the second baby. How is TTTS Identified? Often, the first sign of TTTS is a "stuck" twin. This is caused by one baby not receiving enough placental blood to make much, if any, amniotic fluid. The membrane separating the babies will shrink wrap the baby to the side of the amniotic sac. Doppler ultrasound can also detect uneven or unbalanced flow within the two cords. Other signs are a weight and/or size differential of 10%-20% between the twins. Often, the mother’s belly can grow so quickly that it could measure 24 weeks one day and 40 weeks 4 days later. When Does TTTS Strike? TTTS can strike at any time during the pregnancy. Usually, a first trimester occurrence of chronic TTTS is fatal and there is nothing mother or medicine can do about it. No one has proven it yet, but it is suggested and stands to reason that there are probably lots of parents who never know that there were twins growing in there before the babies pass on and begin to be absorbed back into the womb. Second trimester chronic TTTS is very problematic because any invasion of the womb could trigger pre-term labor, which would be fatal at this point. The babies are too small to deliver and too big for re-absorption. Current procedures give these twins a fighting chance where, even just a few years ago, little chance existed. Third trimester chronic TTTS is perhaps the easiest to deal with. In this case, the babies are viable outside the womb, so, if things get too bad, the option to deliver is real. Internal Indicators
External Indicators
What Can You Expect? First of all, I want to stress that because of different combinations of cross-connecting and different sizes of those vessels that do cross-connect, this disease can show up in a very wide number of ways. As there is little that can be done in the early stages of the pregnancy, I will try to focus more on second and third trimester cases. It is not uncommon for a TTTS pregnancy to be mistaken for Monoamniotic (MoMo) early on, if the donor baby is not receiving excess blood right from the beginning. The diagnostic clue is that the donor baby will be "stuck" to the wall of the womb and will move its limbs little, if at all, during the ultrasound reading. It may also be difficult to detect the donor baby’s bladder through ultrasound, if TTTS has progressed far enough. Each ultrasound visit should include a Doppler reading of the blood flow in the cords and other places. In the cords, differences in flow should be measured and noted and, if possible, the number of vessels that are functioning in each cord should be determined. This can give you an idea about placenta share and it can be a supporting clue in a TTTS diagnosis. If TTTS is allowed to progress without intervention, the recipient baby may begin to experience a hardening of the heart. This is caused by 2 factors: 1) the amount of blood being processed (since this baby is getting its own supply plus some of its sibling’s) and 2) the thickness of the blood. This hardening of the heart can progress to a point where heart failure occurs. Should heart failure begin, water drops, called hydrops, will form in the recipient’s body tissue. This will usually precede the demise of the baby by only a couple of days, if that many. However, should TTTS be corrected by any method, (such as amniotic fluid reductions, surgery or birth) before it has advanced to far into this stage, the heart will usually correct itself as it grows. Anemia is the biggest problem for the donor. If left untreated, TTTS-driven anemia will be terminal for the donor baby. Again, if intervention corrects the transfusion syndrome, then the anemia will correct itself. What Can You Do Now? The first thing you should do upon receiving a TTTS diagnosis is find out the answers to the following questions, if possible:
The second thing you should do is schedule a second opinion. This is no reflection on your doctor’s abilities. Twins occur about once in every sixty pregnancies. Monozygotic twins account for about one third of these twin pregnancies, and TTTS occurs in an unknown fraction of the monozygotic twin pregnancies. Some OBs can go their whole careers without diagnosing a single TTTS case. Most see only a handful throughout their careers. There have been a lot of advances in diagnosis and treatment over the past 5-8 years, but not every OB will be familiar with the syndrome or the advances in treatment. Since doctors do not see it often, they may not feel compelled to spend much time keeping up to date with it. It is always my recommendation to get a second opinion from one of the leading experts in the TTTS field. One good thing about the second opinion here is that it does not require a second trip to the doctor. Doctors can review the U/S results remotely. You need only get in touch with the two doctors’ offices and they will transfer the information. In many cases, contacting one or the other is enough, as long as you supply all of the necessary contact information. TTTS progresses rapidly once it begins showing its ugly head. Often, the prognosis is grim. Due to the low occurrence of TTTS in the population, and the newness of some of the treatment plans, it could be a number of years before the statistics available to most doctors accurately reflect the growing success rate of the new medical procedures. Most doctors currently believe that, when left untreated, chronic TTTS diagnosed before week 25 is so close to 100% fatal that survival odds are almost negligible. You may be told that you have, at best, a 5% chance of taking even one baby home some day. Most parents are devastated. When parents finds out that a child is on the way, they begin preparing emotionally and logistically. When they find out there are 2 babies on the way, they often go into overdrive and double their commitment to the pregnancy. It is difficult enough to come to terms with the fact that it is twins; to deal with the prospect of the imminent loss of both can be devastating. The purpose of this essay is to inform you that the outlook is not as grim as the currently available statistics suggest, and you must marshall your wits and energy and prepare to educate yourself and take action. You may not always have time to sit back and ponder the options. You must be quick and decisive. To create a proper action plan, you need a lot of information and you need it quickly. You will not have the luxury of time to get over the shock of the diagnosis before you must take steps in your attempt to avert an outcome that is inevitable if TTTS is allowed to go untreated. Obtaining a second opinion from a recognized expert on TTTS is a positive first step. The third thing you should do is find hope. Seek out someone who has traveled the road of TTTS. . I cannot encourage you strongly enough to get in touch with someone who has walked this road ahead of you.. Thanks to the various new techniques, TTTS patients enjoy a tremendous and rising success rate, and talking about this with someone who has experienced it, and hearing their success story, can be tremendously reassuring and empowering.. Today, with proper treatment, there is a lot of reason for hope. I have provided some links and other information regarding resources for TTTS. These sites are not affiliated in any way with Twinstuff. Some belong to doctors or hospitals. Others are charitable foundations. Definitions
Links
http://twinstuff.invisionzone.com/forum/index.php?showforum=26
http://www.covhealth.org/stellent/groups/public/documents/www/cov_014262.hcsp
Essay originally written by the father of surviving TTTS twin girls who has traveled this road. Author: Eric Barr Editor: TwinStuff Moderator Renee 'Nifty' Hall Written 2004-04-09
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TTTS
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