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.
Thanks Dory and Chody - I appreciate your words. This forum is the first place I go every morning, and its your words that make each day easier to bear.
We brought the boys ashes home last night, it was very bittersweet. I feel comforted knowing they are with us now, it felt very surreal when we were seperated. In regards to memoralising them I've got a few ideas but I'm still unsure. I'm getting a picture drawn of them that will sit on our family shelf with their ashes, and I think I'm going to plant a tree, but I've not figured out what type yet. It would be nice to see something grow and live if you know what I mean.
I've moved passed being angry now - just very sad and will probably always feel let down by the system.
I agree, I also think there should be more info. If for no other reason than to help prepare you if the worst should happen. I went through so many highs and lows at that time and felt quite isolated. I wish I could have been in contact with other mums who had gone though, regardless of whether their outcomes were good or bad. Having said that, I guess they don't want to stress you anymore than you already are at the time. The simple answer is, there is no good thing about losing a baby no matter how or why.
I don't know much about TTTS either, but I know the pain of losing beautiful twin boys.. Take care and know that you, your family and your beautiful son's are being thought of.. I am sure you will find many beautiful ways to remember them..
Sarahrach - how are you doing today? One of the ironic things about the grief journey after the death of your babies, is just how unpredictable it can be. I thought I was doing ok, but then I read about somone who had just experienced an extremely premature birth and the death of their baby, and in an instant I was back reliving my own experiences.... even more than a year on.
So I guess I am trying to say, expect variable days..
Ok here a few of the memorial ideas I found most helpful - To Write Their Names in the Sand, Say it with Flowers Rory's Garden, Waterfall Angels - these sites use your darling boys names to take wonderful tribute photos. There are also others - say for instance names written on sea shells, or on the pavement in coloured chalk, or with coloured stones or computer generated written in the stars or clouds. There are also sites where you can request jewellery be made, or candles. I will have to send you these links after I go though my list. To Write Their Names in the Sand is run by Carly a bereaved mother, whose dream about her son Christian became the inspiration for her beautiful photos - she has also expanded her repetoire, so you might like some of her other ideas.
Hi Dory - I'm doing ok today. I can see what you mean about the ups and downs. It helps to talk about my babies and I'm getting pretty involved in advocating how identical twin pregnancies are managed from an OB perspective through to putting together a information sheet for parents when they find out they are having identicals. I'm hoping once that's complete websites such as Belly Belly will consider putting it up as a sticky so at least there is a point of reference moving forward.
I've made contact with The Royal College of Aust and NZ Obstetricians and Gynecologists and they have no standard practice for how OBs should manage these pregnancies including recommendations on frequency of scans. They have now added this to their agenda for the next meeting in November. So hopefully something may come from that.
Your memorial ideas are beautiful, I will Google and perhaps will find something in that list that will bring comfort.
Blest - honey, oh my goodness. I read your story, you sound like one of the strongest women ever. It helped me so much to read your words, some of which I've been thinking also. So thank you for being so strong for writing that and making it available to people like me.
Sarahrach - I am so so impressed.... well done on contacting FRANZCOG and getting them to put an item on their agenda. Effecting change can be slow going but you have already achieved so much. Are there guidelines in any other countries such as the UK or USA or Europe ( I know Europe is large ) that you might be able to draw from? Also have you thought about contacting the neonatalogists in the level 3/tertiary care/NICU hospitals who might also have some input into how twin pregnancies are managed? They might have a perspective. Or maybe the high risk clinics at the larger hospitals? I saw an obs who specialises in high risk pregnancies and TTTS ( one of the few Dr's who've successfully completed the laser ablation treatment, as I understand it) at the Mater at Brisbane although I didn't see him for that reason. I can PM you the Dr's name if you like.
BTW - BAL ( BlessedatLast) - is a simply amazing mother and woman, I agree.
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Feeling so angry today
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.
) that you might be able to draw from? Also have you thought about contacting the neonatalogists in the level 3/tertiary care/NICU hospitals who might also have some input into how twin pregnancies are managed? They might have a perspective. Or maybe the high risk clinics at the larger hospitals? I saw an obs who specialises in high risk pregnancies and TTTS ( one of the few Dr's who've successfully completed the laser ablation treatment, as I understand it) at the Mater at Brisbane although I didn't see him for that reason. I can PM you the Dr's name if you like.
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