On the "Big Schism" in TTTS today.

Hello Everybody, I hope you all made it through the Holidays OK. If you made it Here, you probably are following the TTTS Boards on FaceBook. Which would tend to make you Aware of the Big Schism, or as some of us might refer to it, the "Mary & the DS vs. The Rest of the TTTS World..." I'll try to get it out to you in as Concise a fashion as possible.
 Mary Slaman-Forsythe runs the International TTTS Foundation, an 501(c)(3) that provides information & support to those who are affected with Twin to Twin Transfusion Syndrome, TTTS. So Far, So Good. In a nut-shell, here's the issues that will eventually Un-Seat this Enterprise from the "forefront" of TTTS Diagnosis & Treatment Information Providers:
1). There aren't enough Survivals to support the "Image" that she's trying to Project to the General Public. It is an Unfortunate & Somber Fact that there Never Really Have Been! Up until Now, the Culture of this condition has been defined by Mary & a rather small group of Double Survivor moms who post Over & Over on Facebook with the latest pictures of their Cute Cute Twins. Which is OK, but nowhere in her site or on her Facebook Page does it say that these Outcomes represent probably less than a third (< 33%) of the total number of cases diagnosed. TTTS has a Mortality Rate that can be accurately described as "Sky-High" & "Carefully Hidden". A general, somewhat rough breakdown of Case Outcomes would look like this: Around 55%, a little more than Half, lose one. Around another 15-30% lose Both. the Remainder comprise the DS or Double Survivals.

First Day of Winter

Hi Everybody, on The Shortest Day of The Year. Today we're gonna talk about Viagra & Cialis, Great Medicines for all of us guys who've got that... Ya Know, the Old Man's Issue... But not For That. No, instead of using these to Make Babies, as it were, Today we are talking about using them to Save Babies that we've Already Got Baking in Her Oven... Yes I said That. Out Loud. There are Ironies here that some may find humorous, I will choose to Join you in those, because I can Laugh or Cry abut them, & I choose to laugh. Anybody heard about IUGR? Interuterine growth restriction? Trying to figure out whether I can Upload stuff or not. OK so we do Pointers. While searching stuff out on the Angiogenesis (blood-vessel formation) tip, I ran smack-dab into this document called "ft355", Where They talk about how placentas form.

TTTS FAQ

Q: What is Twin to Twin Transfusion Syndrome TTTS?

A. It is a disorder involving the Placenta's "Vasculature" or Blood-Vessel Pattern. In Monochorionc twin pregnancies, AKA those with one placenta, there is always some shared circulation between the Twins due to the fact that the placenta is Bifurcated, or "forked" In Two. The placental tissue at the root, & in the immediate vicinity of, this placental "fork" contains some Anastomoses, blood-vessel connections between the twins through which their circulation is shared. 6 times out of 7, the "Net Flow" through these shared connections is in a state of Balance, with neither twin experiencing an over- or under-abundance of fluid. One time out of 7, however, this shared circulation is unbalanced, & the twins then take on the roles of Donor, who is losing fluid, & Recipient, who is gaining fluid, through this Twin to Twin Transfusion.

    These issues can lead to complications that are potentially lethal to either, or both, of the twins. Untreated TTTS that progresses beyond its mildest Stage has a Mortality rate over 90% for both twins.

    Early detection can serve to turn this figure on it's head, however, with survival rates approaching 90% for at least 1 twin if TTTS is detected & intervention is performed PROMPTLY. 

    Identical Twin Pregnancies need to be monitored by Ultrasound on a WEEKLY BASIS to guard against TTTS, mild cases, Stages "0" and "I",  need to be monitored 2 or 3 times more often, A Perinatologist, preferably one with TTTS experience, needs to be involved at the first sign of possible TTTS. 

    "Chronic-Form TTTS" or Twin Oligohydramnios Polyhydramnios Sqeuence, "TOPS" has been often known to progress at a murderous rate, with loss of 1 or both twins sometimes within days of fetal size or amnio-fluid Discordance being detected. The greatest danger to the twins, by far, is in the beginning of the Third Trimester. Chronic-Form TTTS is treated by "Amnio-reduction", where the mother's amnio-fluid is drained with an Ultrasound guided needle, usually more than once, or by Laser Ablation, where a surgeon using an endoscope makes a map of the placental vasculature then uses a laser to "coagulate" or seal off shared connections between the twins.

    "Acute-form TTTS" is thought to be caused by some form of Disruption to a previously Balanced shared circulation, possibly as the result of an embolism or blood clot, and strikes without significant warning. In addition, TTTS has been known to take the following "Exotic" forms, which are quite rare:

    Twin Anemia Polycythemia Sequence, "TAPS" occurs when an initially slight fluid imbalance results in the capture of most of one twin's Red Cells by the other. Anemia is the name for the condition in which there aren't enough Red Cells in the blood, limiting it's oxygen-carrying ability. Polycythemia is the name for the opposite condition in which the blood has a vast over-abundance of Red Cells, overloading the system. Both of these are potentially Lethal conditions. The lack of fetal size or amnio-fluid Discordances in TAPS makes it hard to detect via ultrasound.


Twin Reversed Arterial Perfusion, "TRAP" occurs when there is a problem in placental vascuature very early in the pregnancy, in this variant, the recipient twin fails to develop a heart; oftentimes there is no Upper Torso as well. Obviously this is fatal to that twin, the donor (or "Pump Twin" as some practitioners term it) can also die from systemic stress brought on by supporting two babies with one heart. 

So Here we Are

Together. 

You've been affected by 
TTTS, 
or someone you love has. 
That's Why You Are Here.
I Welcome You. 
You could be a New Mom, 
Recently Diagnosed, 
or Her Old Man, 
Trying to get some Real, 
Hard Information on 
Twin to Twin Transfusion Syndrome, TTTS. 
To Cut any 
Bullshit 
Out of What's 
Happening, Now. 
Because what You Just Heard 
sounded Un-Believeable. 
Welcome to All who Would Dare to 
Fight TTTS.
We Are Legion. We Fight the murderer.