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Hi all - this is my first time here! What a great site.
We are thinking of going down the IVF track using PGD to start our family, as I am a carrier of Muscular Dystrophy. Has anybody used this type of assisted conception and how did you find the process?
Hopefully Iris will see this post, she is going down the same track I think?
Danni's right, Iris is doing PGD.
Check out the LT TTC & AC thread, Iris has been posting there.
Tam has too I think. Goodluck farm gal.
Thanks for your help guys. I will try and track them down..
Hey farm gal! My DH and I are both Cystic Fibrosis carriers and our daughter Alana has CF. We found out we were both carriers when Alana was diagnosed with CF at 7 weeks old. We are doing our first PGD cycle in April. Have you spoken to a Fertility Specialist yet? The first thing we had to do was a feasibility test. Basically this determines whether you are suitable for PGD. This cost $1000 and is not claimable through medicare or health insurance. We did this through our genectic councellor. Then its getting a referral to a FS and then doing the preliminary test that everyone else gets, U/S, blood test, sperm analysis etc. PGD is very expensive as I believe the PGD side of things is not claimable through medicare, but the IVF cycle is. But hey, if we can have another baby without CF it would be worth every cent (just wish I had the choice with Alana). What are your chances of having a child with muscular dystrophy? We have a 1 in 4 chance with every pregnancy? With IVF if they can get 2 cells from the embryo then we have a 98% chance of no CF, if they can only test 1 cell then it goes down to 95%, which is much better then if we tried naturally. HTH!
Hi Iris, thanks for your reply! I find it hard knowing I am a carrier, but PGD is a god send. My brother had MD and I don't want too see anyone have to go through the pain of that disease, let alone my own child. My hubby and I are still thinking about going down the natural path - as we have a 3 in 4 chance in not having a child with MD, but we have been trying for 12 months with no luck, so to me that is a sign that we should do IVF anyway and take full advantage of PGD.
We have been to a genetic councellor and they have found the error in the DNA so they know what they are looking for and we can use PGD...this was free though, so maybe there is another stage we need to go through. It seems wrong that PGD is so expensive because its saving the govt. money by us not having a child that will require masses of medical and social help in the future..
How is your daughter? I hear they are doing quite a bit of research into CF so fingers crossed this can help her one day.
Cheers!
Oh I total agree with you in regards to the PGD. I to have been saying that it seems crazy not to cover PGD. In the long run surely it would be a cheaper option to cover this for famlies with known genetic conditions, then the medical bills for that child. The average life for CF'ers is around 36 years (and getting longer), you can't tell me that covering PGD would be more than the medical bills for 36 years.
Yeah your chances are the same as CF. We struggled for about a year over whether to try again naturally or do IVF. We felt the IVF was the better option for us. I just don't want another child to go through CF like Alana.
I to find it hard knowing that I am carrier too. I have done a lot of "Why me?".
The feasibility test is different to the genetic testing, its specific to doing IVF. Our genetic testing was also free.
Alana is doing really well. We have been very lucky that she has had no hospitalisations. They are doing heaps when it comes to research for CF. I just keep hoping that oneday I will get notified that they have found a cure. That will be the best day of my life!
I think I may write a few letters and find out why it is not covered, as I would love to know their reasoning behind it.
Good luck with your first cycle in April, I will have my fingers crossed for you. I will no doubt have some questions for you as time goes by.
cheers!
Hi farm gal, my DH and I are in a very similar boat... he has myotonic muscular dystrophy (MD) and we have decided to go down the PGD route also as there is a 50% chance of passing it on and it magnifies with each generation :(
We've done heaps of research and counselling over the past couple of years about our options, however we now have to go to Sydney as no-one really has the technology here (Brisbane). We have a referral for someone at SIVF and I'll be ringing them next Tues (his office is closed until then) and i'm told that we should be able to start in July (:pray: )
Would love to exchange notes with you as it's difficult to find anyone who is going through exactly the same thing!
I forgot to mention... this is my first time here also (well, second post now!). So hi everyone! I've been lurking on a number of different forums for a couple of weeks searching for anyone going through similar things and well here I am!