As you may know I lost my identical boys to twin to twin transfusion syndrome last week at 19w4d.
I've since been looking into twin transfusion stats and its horrifying with many saying more than 1 in 5 will develop problems.
What I don't understand is why when the odds are so stacked against these pregnancies that I'm only finding out about these stats now. I mean I knew TTTS could be an issue, just not that it was so high.
Why arn't we automatically scanned weekly from 16 weeks or even better why arn't we offered the laser procedure to try and prevent the whole thing from occuring in the first place.
I so wish I'd known more as we might of had a chance if we'd had caught it early.
Sarahrach - I think its normal to feel the anger you are feeling at the moment. I don't know anything about TTTS but just wanted to give you a hug. xox
Sarahrach I am sorry you are feeling so very confused about your treatment after losing your boys.
You probably know TTTS happens when the babies share a placenta (monochorionic). One twin usually grows abnormally big and the other suffers. Untreated both babies have a very very high morbidity rate.
If you were not monitored carefully, told you had only one placenta and how that would likely affect your sons then you may have a case to take this matter further. Ultrasounds are done regularly to rate the babies growths. Laser treatment can be done but so can other treatments. Generally these do not happen until the babies have reached "viability" at around 26 weeks.
Usually the amniotic fluid is reduced around the larger twin.
I am so sorry my love. Perhaps it was deemed that your little boys were growing with too much disparity - but you should have been fully informed, having regular ultrasound & monitored very closely. This is one of those pregnancies that is a high risk obstetricians field & requires the finest of medicine.
I am so sorry to read your sad news. Having experienced the loss of identical twins to TTTS (stillborn beautiful girls at 30 wks) I know exactly what you mean. I discovered so much after they were diagnosed and even more after they died. I wish I could have had more knowledge earlier, although what help it would have been, I don't know.
Anyway, just know that I am thinking of you and sending you a big warm hug.
Thanks ladies - oh Deb, I'm so sorry for your loss, its just an awful thing to lose twins, its amazing how special and chosen we feel when we find out and just so sad that it ends that way.
I really think that the system needs to change in how identicals are dealt with as there just seems to be such a lack of information and procedure on managing the pregnancy. And I agree, whilst it might not change the overall outcome (at least in my case) it would have allowed me to fight for my boys.
I'm not blaming anyone but I do feel let down by the system which did not inform me about the stats being so high. I feel very motivated to do something in this direction to ensure women are informed and educated about these stats and the options available to them when they are first told they are carrying identicals. If knowing this information (ie getting weekly scans from 16 weeks) changes the outcome for just one family then that's got to be a good thing. I refuse to let Liam and Dale's death be in vain.
Sarahrach - my sweet blossom I am so so sad to hear about the loss of your precious twin boy Liam and Dale.... go gently on yourself in this very raw time. I agree to be blessed with twins is special and more risky, but you're right, the risks don't feature a lot in most people's thinking about twins. My twins were dichorioic diamniotic so TTTS wasn't an issue for us. Irrespective of what you do, your angels did not die in vain, but your desire to help others and advocate is a beautiful tribute to your boys.Let your DH know he's being thought of too This is a tough time for you both. Fly free Liam and Dale and be always in the heart of those that love you.
It might be too early for you to be thinking about this, but have you thought of ways, other than advocacy to memorialise your boys? There are some great ideas and if you are interested I can point you to a few that have helped me.
Oh Sarahrach, I'm so sorry to hear your news. I didn't realise that you had lost your boys. I'm sorry that I don't have any advice on TTTS but I just wanted you to know I am thinking of you. Take care of yourself.
Feeling so angry today
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Perhaps it was deemed that your little boys were growing with too much disparity - but you should have been fully informed, having regular ultrasound & monitored very closely. This is one of those pregnancies that is a high risk obstetricians field & requires the finest of medicine. 
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