Anyone have to do PGD with IVF?

njohnson1972 · January 2010

This afternoon I will find out if we have to do PGD with our IVF. I am a CF carrier. Waiting on DH's results. MIL has cousins with CF, so there is a chance that DH could be a carrier too.

The nurse said it could be an additional $4500 for the PGD for CF. Like this whole process isn't expensive enough. She said she wasn't certain about the cost, though. My RE will call me this afternoon with all of the information.

I am worried because I know that I am not likely to produce a lot of eggs (DOR). Taking a cell for testing from the few we do hopefully get - won't that affect our eggs viability?

If we don't do PGD and we are both carriers, we have 25% chance of the child having CF.

Ok, I am going to stop worrying and obsessing. There is nothing I can do until I hear from the RE this afternoon.

LCB34 · January 2010

If you have to do PGC due to CF you need to talk to *jenjen*. She is a local Houston girl and is wonderful!!!

I'm sure she will be willing to pass on any and all advice she has.

miesl · January 2010

Do you know what CF mutations MIL's cousin has? There are 1500+, and most are rare.

I'm a carrier of a rare mutation, and one of DH's mutations is rare as well. Do you know if they ran a panel test or a full screen? Our rare mutations were not on any panels, we had to have a full screen. If you know what mutation runs in the family - make sure those are tested for at a minimum.

PGD was about that for us, there was the PGD cost + the IVF clinic's biopsy fee.

If you have low count, they can "pool" embryos (freeze some) from multiple ERs so you only run the PGD once.

KaliChick · January 2010

A friend of mine had to do PGD with IVF. She was not successful with pregnancy that cycle but I don't think it had anything to do with PGD. The only thing I do know is once you do PGD you cannot freeze any embies.

At the same time, you do what you need to do!!! Hang in there!

njohnson1972 · January 2010

I do know that they ran a full panel on my DH.

I don't know anything about the cousins with CF.

I am going to just take a nap, watch crappy daytime TV (I am not working today - MLK) and wait for the RE to call. I shouldn't stress about something that could be a non-issue ::fingers crossed::

Thanks!

may2806 · January 2010

I faced a similar issue because I am a carrier for Fragile X and have up to (with the margin of error) a 29% chance of having a child with the full blown syndrome. I thought a lot about PGD and had many of the same concerns as you because I am also DOR - I'll be lucky if I get more than a few eggs. I'm not sure how it works for CF but for Fragile X, doing PGD would only tell us whether the embie received 'bad' X chromosome or the good one; not whether it was a carrier (like me) or full blown. Also, PGD requires a day 5 transfer, and this concerned me with only a few (possibly only one) embie. I also talked with the doctor about freezing embies to batch them into one PGD; however my RE doesn't do vitrification (I think that's what it's called) which has a much better thaw rate than regular freezing.

We were presented with another option, which is moving forward with IVF without PGD, and then doing a CVS at 9-10 weeks. At this stage they can tell whether the fetus is a carrier or has the full blown syndrome, and a decision can be made at that point. Now I realize this is ethically questionable ground and a very personal decision, but for us it would give us a much higher chance at a healthy baby than PGD, so that is what we are going with.

Good luck, I hope DH is not a carrier and you don't have to worry about any of this!??

smeyer · January 2010

I don't have any personal experience, but I'd suggest that you XP on SAIF. I know of at least one poster over there who did PGD to test for a heart defect. I'm totally blanking on her name, though... sorry!

austxgrl · January 2010

We are doing PGD/IVF because I carry a rare single gene defect. We are stimming right now and had our first follie scan this morning. If you have any questions feel free to email me at lainaustin at yahoo dot com. Good luck to you.

*jenjen* · January 2010

KaliChick:

A friend of mine had to do PGD with IVF. She was not successful with pregnancy that cycle but I don't think it had anything to do with PGD. The only thing I do know is once you do PGD you cannot freeze any embies.

At the same time, you do what you need to do!!! Hang in there!

Not true actually...I have 2 frozen embies after PGD.

njohnson1972 · January 2010

Good news - RE called DH is not a CF carrier, so we get to skip PGD.

Thanks for all of your insight!

*jenjen* · January 2010

Hi there! I really hope your DH is not a carrier, so you don't have to deal with it, but if so, I'd be more than happy to tell you everything I know about PGD. I'm a bad stim responder and dont get many eggs either, but thankfully my quality has always been good, so it was easy to make it to a 5 day transfer...hopefully you'll be the same.

I'll keep an eye out for your update...fingers crossed that he's not a carrier!

Oh, and I agree with miesl, you should find out the mutation on dh's side of the family and make sure he was checked for that, in case it's rare.

ETA - just saw your update...GREAT NEWS.

KaliChick · January 2010

*jenjen*:
KaliChick:

A friend of mine had to do PGD with IVF. She was not successful with pregnancy that cycle but I don't think it had anything to do with PGD. The only thing I do know is once you do PGD you cannot freeze any embies.

At the same time, you do what you need to do!!! Hang in there!

Not true actually...I have 2 frozen embies after PGD.

Wow! That's awesome!! Our RE had told us after PGD no freezing. So maybe that's just his policy and there's a process where they can freeze them. I apologize for the misinformation.

*jenjen* · January 2010

KaliChick:
*jenjen*:
KaliChick:

A friend of mine had to do PGD with IVF. She was not successful with pregnancy that cycle but I don't think it had anything to do with PGD. The only thing I do know is once you do PGD you cannot freeze any embies.
At the same time, you do what you need to do!!! Hang in there!
Not true actually...I have 2 frozen embies after PGD.
Wow! That's awesome!! Our RE had told us after PGD no freezing. So maybe that's just his policy and there's a process where they can freeze them. I apologize for the misinformation.

No prob...just didn't want to scare anyone off when they should do PGD My RE said there was no difference in the way they freeze them though, so not sure why your RE would tell you that. weird.

Want a personalized experience?

Anyone have to do PGD with IVF?

Re: Anyone have to do PGD with IVF?

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