So I find today much harder than I thought it would be. I thought I would just blow up my Facebook page with awareness facts, and I have instead found myself incredibly saddened for those who have lost a twin or both.
Today I have burst in to tears that sadly, there is a problem with the overall awareness of TTTS in the general public. No one knows about it. If you don't get a good doctor, he or she may not know about it, or not know ENOUGH about it. I keep reading posts on TTTS Facebook boards of people's obstetricians being complete idiots and either thinking they can handle it, and being too ignorant to refer the patient out to a specialist. Others taking the "wait and see approach." Really??? What if you had cancer and your doctor didn't refer you out to a specialist, or told you to wait and see if it gets worse before taking the next step. Would you listen? Hell no! Because we all know that cancer is deadly. So imagine this: You are pregnant with identical twins. You have a friend who just had fraternal twins. Your OB notes that the twins are different in size at a routine ultrasound. You call up your twin mommy friend. She tells you that hers were also different in size, so don't worry about it. This is a hypothetical situation I just made up, but I can bet this has happened before. What people don't know is that in identical twins, they SHARE a placenta. That is the only reason the obstetrician can tell you for certain when you are pregnant that your twins are indeed identical. Fraternal twins have their own placenta. TTTS occurs in 15-20% of identical twin pregnancies. Surprising, how can you expect that the placenta would most of the time naturally know to share evenly between the two babies? If you know someone who is pregnant with twins, identical or fraternal, please take the time to ask them if they know what TTTS is. You can tell them that one of your friends had twins who had TTTS and you just thought you would mention it, and encourage them to Google it. Regardless of if the twins are identical or fraternal, they NEED to be aware of it. Here's why: 1) .5% of all TTTS cases happen in fraternal twins. There is hardly any information on this anywhere on the internet, and most of the "criteria" for a TTTS diagnosis the main point is that the twins must be monochorionic (identical). I'm not 100% sure of this, but I believe these cases happen when the two placentas fuse, which does happen to fraternal twins. Problem is, most OB's would be happy to tell you that they are 100% positive that TTTS does NOT happen in fraternals. They wouldn't even consider it as a possibility if your babies are different in size, because that alone is common in fraternals. I met someone in an on-line twin pregnancy group who posted to us that when she went to deliver her fraternal twins, that one came out red as can be and passed within 4 hours, and the other, pale. This coloring is common of aggressive TTTS deliveries that have not been treated or for some reason was not able to be controlled. You will have the one getting too much blood, one not getting enough, thus the coloring changes. I wonder if this has happened in other fraternal twin births and the placenta was discarded or not looked at by the proper type of pathologist who knows about TTTS. There could be more cases of fraternals with TTTS that were not properly documented. And finally... 2) My friend Amber that I also met in this online twins group was told her twins were fraternal at her first ultrasound, then when she went for her next (she probably would have been seen sooner if her twins were thought to be identical) she had Stage III TTTS on a scale of 5.
Please please tell anyone you meet pregnant with twins about Twin-Twin Transfusion Syndrome. It means so much to me. Even if you can't remember what TTTS is, they can Google it and find out what the signs are.
Here's some more information if you are interested:
Info on TTTS from the Fetal Care Center in Cincinnati where we were treated:
http://www.cincinnatichildrens.org/service/f/fetal-care/conditions/ttts/default/
Video of laser surgery being preformed:
http://seraph.cchmc.org/MediasiteEX/Viewer/?peid=a81fe413-c9e1-4f45-a34a-63efd73c8d15
THANK YOU for helping me spread the awareness! You might save some babies' lives!
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