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Thread: Sydney IVF recurrent miscarriage program

  1. #1

    Default Sydney IVF recurrent miscarriage program

    just seeing if anyone has done this??? and if so... how was it? what sort of testing was done? was it worth it??? sorry for the questions but we are looking into doing it and I am trying to get all the information I can to help make the decision as to if we should do it.



    thanks in advance for the info

  2. #2

    Join Date
    May 2008
    Location
    NSW
    Posts
    696

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    Hi Boble

    I did the program and can fill you in on any questions you may have

    We elected to do the program as we were going to do IVF with PGD (to reduce the risk of chromosonal probs) and our Ob suggested it would be worth making sure there were no other issues present before going through the IVF roller coaster and potentially falling PG, only to lose another PG.

    Basically we did a lot of blood tests over a monthly cycle, plus they perform an ultrasound, NK cell biopsy (from uterus) and another more involved ultrasound involving inserting saline inside so they can get a very good image of how you are functioning. The tests go above and beyond the standard investigative tests your GP may offer (about 40 tests all up).

    All up, it generally costs about $1500 after Medicare, though in my case it was less as I had passed the Medicare threshold and also passed up the saline test as I had had a previous investigative laproscopy and hystereoscopy.

    The result for us: we were mostly interested in the advanced chromosonal study (pics up very tricky translocations, etc) as we had had two confirmed chromosonal losses. Turns out, DH and I are both normal and our problems come partly down to my advanced maternal age. But they did pick up I have a double gene for MTHFR (present in 10% of the population). This can raise homocysteine levels and cause clotting (though not in my case). I also learned it gives my body a greater tendency to fall PG, even when the conditions are not correct. As such, I was conceiving chromosonally incorrect babies that might not have implanted in other women.

    And just to let you know... I am 12 weeks PG today, safe in the knowledge my little bubba is more likely to make the journey this time. It is a relief not to be worried about whether I have a clotting disorder, etc which can be easily treated once found.

    Hope this post is of help to you. PM me any time if there is anything else you would like to know

    WTH

  3. #3

    Default

    thank you so much for the info. I can't PM yet so thought it would be easier to reply on here. I do have another couple of questions though.

    Oh, you may not know this one.. I was wondering if you have to stop ttc while running the tests?

    also, is it $1500 flat rate or do you pay $x for this test and $x for that test etc etc? we have already had a little bit of testing done (incl. the chromosomes testing for both myself and DH... Im pretty sure anyway)

    I am fairly sure we are getting pretty close to the reaching the safety net as well. Due to the m/c and many ultrasounds plus a heap of doctor appointments and specialist appointments - we have not quite reached it yet but must be getting close.. so if you don't mind me asking - around about what was your out of pocket expenses for it?

    Oh and what is PGD?

    thanks again for chatting with me about it and congrats on 12 weeks today

  4. #4

    Join Date
    May 2008
    Location
    NSW
    Posts
    696

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    Hi Boble

    Yes, you pay as you go, which will help your Medicare threshold kick in. I can't remember the exact final cost - and I did bypass two tests - the NK uterine biopsy and the sonohysterogram (saline US). So all up it cost about $1,000 and I had past the threshold.

    The program does take a full monthly cycle, plus you need to wait a couple of weeks to get the final report. Not easy to wait when you might be so desperate to ttc again! This for me, was the hardest part of the program! They do not recommend you ttc during the program as pregnancy will throw out a few of the results, such as TSH.

    Just want to point out we had chromosonal testing done, too. But with the SIVF program it is advanced chromsonal testing - goes beyond the regular test, where they can uncover some bizarre translocations not picked up by the usual test (to do with "short arms" and other strange technical phrases). I was assured the extended testing was beyond the normal test which I too, had already done.

    The girl who runs the program - Justine - is FANTASTIC. No question of mine was too silly and she always had time to speak to me on the phone. I would definitely contact her if you have any further questions.

    PGD stands for preimplantation genetic diagnosis. While I have not had trouble conceiving naturally, it seems each time I do I have issues with embryo quality. So we turned to IVF and had the embryos tested to check for 8 chromsonal disorders. And so far.... it seems to have worked

    Good luck
    WTH

  5. #5

    Default

    thank you so much for taking the time to reply to me. Ohh the thought of taking a cycle off sounds more then I could cope with at this stage.. but to suffer another m/c would be devastating argh! this ttc thing just keeps gettng harder and harder.

    i actually spoke with Justine the other day and she was lovely.. but i forgot to ask these questions so just trying to get more info before making the decisions as to if we will or won't turn to the testing. thanks again for spreading some more light on it for me.

    I will keep you updated with what we decide.... but at this stage I think I might give it a couple of months.... I don't think I can NOT ttc at the moment.

    thanks again and I wish you all the best xxx

    Bel

  6. #6

    Join Date
    Mar 2008
    Location
    mid north coast, nsw
    Posts
    1,644

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    just dropping in here to say, WTH it must be so reasurring to have that information now, rather than wondering what was going wrong, or causing the problems.

    boble- I am with SIVF too, and while I havent had the full recurrent miscarriage program, I have done a range of tests (18 vials of blood) for recurrent miscarriage through my FS in Newcastle, which led to the discovery I have antiphospholipid syndrome, which causes blood clotting problems, and can be treated with daily clexane injections from the time of ET and then through pregnancy. It is a relief to know this and I am very glad I was tested. wishing you the best of luck

  7. #7

    Default

    thanks Possums. I am thinking go going for it if we don't fall preg this cycle. I still dont feel like i am ready to not be ttc so I am hoping they can run the tests that they can do while ttc... and then I can look at the other tests if and when i am ready.

    thanks so much for your reply

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