These little girls were found to be identical (from the fact that were monochorionic) at 20wks in May of 2007, medical standard for ultrasounds...in my opinion too late for multiples pregnancies. (Why is May of 07 important? That means she was on the timeline as me in the same county. I found out we were monochorionic at 17wks in April 07) She didn't have another ultrasound until a week before delivery, because of preterm labor and visable hydrops. After birth it was determined that they had TTTS. Both born at under two pounds, one grey (anemia??) / one red (polycythemia??) and now with a list of neurological challenges. They amazingly survived TTTS untreated...I guess they are one of those .05%.
Would early diagnosis have changed their outcome? I don't know but I'd lean towards yes. Would treatments have saved them from being born too soon and sick? I don't know. Would simply having insurance, that was in the network Dr Ball is in, made a difference? I don't know. It sure makes me grateful for the circumstances of my situation and keeps me actively asking mothers of multiples to count placentas, suggesting earlier than standard ultrasounds, and educate themselves.
4 comments:
Man, it is just so terrible to hear of a missed diagnosis like that! Shows why self-education is so important so that you know to ask questions.
Libby-I have a friend in Louisiana that just found out she is pregnant with twins. What can I suggest to her regarding TTTS screening?
Laura,
http://www.expectantmothersguide.com/library/houston/top-5-questions-expecting-moms-of-multiples-should-ask.htm
http://miraclesofmultiples.blogspot.com/
First, I just wanted to thank you for the sweet comment you left on our blog... as you always do.
And, coming over here to find your most recent post about these sweet twins that went undiagnosed is so heart-breaking. Even though we lost our little girls, I feel so comforted knowing we did everything we could and were in the best possible care we could have been in.
I was very disappointed in my regular OB that I finally dropped at 16 weeks when she tried to fight my decision to see a perinatalogist. Had I stayed with her, I'm pretty sure we would have lost our daughters much earlier. I hate thinking of other OBs out there like her who think they can handle a mono-di pregnancy, treating it like a singleton... and worry about the women in their care who trust them because they're "doctors".
I obviously have some strong opinions that needed to come out... sorry! One day (hopefully soon), when my heart feels a little stronger, I want to do more to make my voice heard about TTTS, as you have.
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