+ Reply to Thread
Page 1 of 2 12 LastLast
Results 1 to 10 of 11
  1. #1
    Join Date
    Jul 2015
    Posts
    29
    Thanks
    2
    Thanked
    3
    Reviews
    0

    Default PGD For Single Gene Disorders

    Hi ladies,

    Just wondering if there's anyone that can share their experiences with PGD. We are very new to IVF and had our first appointment with our FS last weekend.

    Any insight would be appreciated

    Thank you

  2. #2
    Join Date
    Jun 2015
    Posts
    26
    Thanks
    1
    Thanked
    5
    Reviews
    0
    Hi, we used PGD to conceive our first child. My husband has a genetic disorder and we wanted to ensure this was not passed onto our children. It was a difficult and expensive process but it was worth it as we now have a healthy 2 year old son. We have just started IVF with PGD for our second child. Happy to answer any questions you have about the process or my personal experience.

  3. #3
    Join Date
    Jul 2015
    Posts
    29
    Thanks
    2
    Thanked
    3
    Reviews
    0
    Hi Mummalovexx, thank you very much. I have lots of questions actually.
    My husband has already had the genetic test done to confirm and identify the gene. Now, the FS has come back to us to say we need further blood tests etc to determine what test is required. Is that how it works, even though the gene has been identified?

    We don't have a problem with doing the tests of course. But it's another $grand on top of the PGD plus 2-4 week wait for the results we thought we already have (and waited for 3 months for previously) just want to start this long process.
    Are you able to share what the process was like for you? I know everyone is different but would love to get some info

    Like you said, I'm sure it will all be worth it at the end and we are very hopeful.

    Thank you !

  4. #4
    Join Date
    Jun 2015
    Posts
    26
    Thanks
    1
    Thanked
    5
    Reviews
    0
    Yes that's right. We originally started in 2010 and it took 3 months to get the specific gene identified then another 18 months to have the PGD test developed! Luckily it is a lot faster now (about 4-6weeks at our clinic). Then you need to go through all the regular IVF appointments which is fertility assessment (blood tests for you and your partner, an ultrasound for you and semen analysis for your partner). Also need to do your police checks if your in Victoria, I'm not sure about other states. And do your genetics counselling and IVF counselling. It's a slow process and involves a lot of appointments which can be hard when your trying to work at the same time. Also forgot to mention that you may also need to get dna samples (cheek swabs) from you and/or your partners parents for the PGD test development. We had to do this for ours. My advice is prepare for it to be a slow process. It can be very frustrating and there seems to be so many hoops you have to jump through just to get started. It's hard when you are so excited to get pregnant. Once your PGD test is developed you just proceed with a regular IVF icsi cycle. After egg collection our clinic does a day 5 embryo biopsy to complete the PGD test and then freezes the embryos. It then takes 2-3 weeks to get the results. You can then transfer a healthy embryo doing a thaw cycle. I hope I haven't confused you with all this info. It's a lot to take in.

  5. The Following User Says Thank You to Mummalovexx For This Useful Post:

    crispyz  (23-08-2016)

  6. #5
    Join Date
    Jun 2015
    Posts
    26
    Thanks
    1
    Thanked
    5
    Reviews
    0
    Sorry if I didn't answer your question clearly. Yes, once you have done the initial test to identify the gene you then have to do the second test to set up the PGD test for your specific gene. Our clinic charges $1600 for this so your price sounds about right. Sadly no medicare rebate : (

  7. #6
    Join Date
    Jul 2015
    Posts
    29
    Thanks
    2
    Thanked
    3
    Reviews
    0
    Oh wow 18 months to get the test developed! I definitely shouldn't be complaining about the 2-4 weeks wait we were told we would have to wait!

    Thank you so much for sharing your experience. I haven't been able to find anything close to how much info you provided us.
    I have been re-reading every word!

    Just out of curiosity, because you have already done PGD previously, does that mean they can do the PgD straight away once you have done the egg collection?

    Thank you again Mummalovexx

  8. #7
    Join Date
    Jun 2015
    Posts
    26
    Thanks
    1
    Thanked
    5
    Reviews
    0
    No worries at all, if you have any questions along the way feel free to ask.

    We presumed that because we had already gone through the PGD set up we could just start straight away for number 2. Unfortunately that wasn't the case for us. Apparently the PGD test we had set up in 2010 is no longer compatible with the new lab technology so we have had to go through setting this all up again. Luckily it's only about 4 weeks these days to set up but we did have to get Dna samples from our extended family again. This was annoying because we wanted it to be a surprise when we got pregnant but now we have had to tell everyone. We have done all that now and hope to start an IVF cycle next month. It took us three cycles to get pregnant first time around but I'm hoping everything goes well and it works first time this time. Fingers crossed

    Good luck with everything. If you have any other questions just let me know.

  9. #8
    Join Date
    Jul 2015
    Posts
    29
    Thanks
    2
    Thanked
    3
    Reviews
    0
    Hi Mummalovexx

    Oh I wonder if DNA swab is requirement for us too. We weren't told anythin about that at all. Just about the blood test and genetic counselling. My DH is the only one with the condition in his family (that we know of). Is that an essential part of the PGD at your clinic? Could you opt to not do it ? What did they say is that purpose of that ?
    Anyway, happy to hear you will be starting the IVF cycle soon. Im crossing my fingers for you guys !
    I hope it's works the first time too !!!

    Also, are you seeing the same FS as the first time. We've only had one app but we are thinking of seeing another doc. Not that anythin was wrong with the one we originally saw - but thought we should see another just to make sure we have the 'best' one for us.

    Anyway, I can't thank you enough for sharing your experience. I know I have said that a few times but you have no idea how helpful you have been !!

    Anyway
    Have a good night

  10. #9
    Join Date
    Jun 2015
    Posts
    26
    Thanks
    1
    Thanked
    5
    Reviews
    0
    Hi, your husbands situation is a bit different to mine so maybe you won't need samples from his family. My husbands condition runs through his family so I assume that is why they need samples from other affected family members for us.
    It never hurts to get a second opinion from another specialist. We recently changed clinics because we were not happy that our previous clinic started outsourcing their PGD testing to America and their fees were higher. We decided to swap to the other clinic in melbourne as they conduct their PGD testing locally and their fee structure is better. Our previous clinic charged $3,700 for the PGD test regardless of the number of embryos whereas our new clinic charges $700 per embryo which is capped at a maximum fee of $2,460. Even though it was a hassle to change clinics I'm so glad we did. The new clinic is so well organised and have been a pleasure to deal with. And the cheaper price is a bonus!

  11. #10
    Join Date
    Jul 2015
    Posts
    29
    Thanks
    2
    Thanked
    3
    Reviews
    0
    Hi Mummalovexx. Hope your weekend has been good.

    Our clinic quoted us $3300 for up to 16 eggs. Plus the $1100 for the bloods to develop the linkage test. Our FS suggested two cycles before getting the PGD- unless we get 16 first cycle a bit hopeful tho that hehe

    I got a letter from FS Friday arvo telling me I need the rubella booster and need to wait 4 weeks before starting any IVF medications. Yes, another further delay
    I guess it is for the best.
    Just wish we could start sooner rather than later.

    Seeing another FS Tuesday week just for comparison. This other doctor is from the same clinic. Since we have the results from the blood tests, do you think the new FS will discuss our results with us? I wonder if Our records will be available to him.

    Anyway hope u are going well. Not long for u til u start your IVF cycle!


 

Similar Threads

  1. High NK cells and possible DQ Alpha gene match
    By Carlar78 in forum Reproductive Immunology
    Replies: 186
    Last Post: 04-11-2016, 11:06
  2. Non-Invasive Prenatal Testing for de novo single gene disorder in WA women
    By Student Sarah in forum Can you help with these campaigns?
    Replies: 0
    Last Post: 19-01-2015, 16:55
  3. DQ Alpha gene match HELP!
    By Carlar78 in forum Reproductive Immunology
    Replies: 1
    Last Post: 22-12-2014, 21:49

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
free weekly newsletters | sign up now!
who are these people who write great posts? meet our hubbub authors!
Learn how you can contribute to the hubbub!

reviews
learn how you can become a reviewer!

competitions

forum - chatting now
christmas gift guidesee all Red Stocking
Fridge-To-Go Australasia
Xmas with a NEW Fridge-to-go Lunch Bag! Fridge-To-Go Australasia
Fridge-to-go 8 hour cooler bags are ideal under the Christmas tree! Now in modern lunch bag designs - fill them with toys and chocolate to make parents and kids happy! Stay super cool and eat healthy and fresh food all summer long!
sales & new stuffsee all
The Health Hub
Give a new mum a fitness boost for Christmas & New Year. Studio-based, small group training sessions - cardio, strength, core, Pilates & boxing. Choice of 16 hrs per week, flexible-arrival feature - bubs & kids welcome! Gift vouchers available.
featured supporter
Maternity Clothes
Looking to buy maternity clothes? :: Check the bubhub directory of local & online maternity clothes shops :: Find preloved maternity wear
gotcha
X

Pregnant for the first-time?

Not sure where to start? We can help!

Our Insider Programs for pregnancy first-timers will lead you step-by-step through the 14 Pregnancy Must Dos!