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What would you do? Re genetic screening.

(13 Posts)
deliverdaniel Wed 17-Feb-16 21:27:27

Firstly, I know that this is a 'good'problem to have and apologise if this is insensitive to anyone desperately trying for a first child (been there and know that feeling well.)

We have 2 healthy DCs, 1 conceived naturally and 1 from a FET after 2 failed IVFs after unexplained secondary infertility. We now have 4 embryos frozen and want to go for a third child. I know many will think this is crazy but I desperately want to do it.

The clinic have offered us the chance to do PGS which involves thawing the embryos, biopsy and testing, refreezing and then thawing again when/ if it's time to transfer. The doctor has told us that there is a 3% risk of damage per embryo from this procedure. The damage would not be to any potential baby, just would mean that the embryo would stop growing after transfer. The PGS would show which if any embryos were chromosomally normal.

Advantages of screening: we would know which embryos were viable and so potentially would avoid 4 transfers and 4 failures/ miscarriages etc (I had 2 miscarriages from our 2 IVF cycles before my son) or a baby with some serious health issues although we would probably screen separately for that in pregnancy anyway. Also we have a family history of autism in the extended family- this can't be screened for, but we could potentially select by gender (this is legal where we live) and girls have a 5x lower risk.

Disadvantages: we don't have that many embryos and obviously could damage them this way.

WWYD? THank you. Again, apologies if this seems spoiled and entitled on an infertility board.

Shellster52 Fri 19-Feb-16 02:06:12

I noticed your post unanswered and know this whole journey is lonely enough so thought I'd reply - although not really sure I have the answer! Although, I guess in your situation there really is no definite answer and it's just up to you which way you decide to go.

Personally, I had 11 IVF attempts. Of those 11, only 7 made it to egg collection (I responded to poorly to make the expense worthwhile the other 4 times). Of the 7, I only made it to transfer stage on 4 occasions so for me, it was not worthwhile paying extra for PGS when I didn't have lots of embryos anyway to pick the cream of the crop from. The most I ever had available to transfer in an IVF cycle was two embryos and so I figured it was a much cheaper method to put whatever I had available back inside me to test if they were viable or not rather than fork out thousands for PGD.

That was how I saw it, and you have the added worry of the risk of the embryos not surviving the defrost, refreeze, defrost again, in addition to the small 3% chance of damaging the embryos with the testing procedure itself. But of course you are entitled to feel differently and I completely understand you wanting to reduce the risk of autism if that is a major factor and perhaps the reason the clinic offered it. (I assume age is not a factor if you were able to produce enough eggs to have 4 survive to the freezer.)

My second cycle resulted in the transfer of two top quality day 3 embryos that resulted in an early miscarriage and I will never know if perhaps my lining or hormones were not optima that cycle, or if indeed both embryos were genetically abnormal. My last cycle was also a double transfer of which one took, so I can only assume that the conditions in my body were right for implantation and that the other must have been genetically abnormal to have not implanted.

Good luck with whatever you decide.

MaryRobinson Fri 19-Feb-16 02:37:27

Our children came from our third and 4th IVF cycles, and also involved help from the recurrent miscarriage clinic.

For myself, and looking at the children we already have I know that I would be very cautious to about it. Obviously Autism

MaryRobinson Fri 19-Feb-16 02:44:20

Sorry
...Obviously autism covers a huge range of issues from not noticeable to others and living independently to very profoundly disabled.

If you are comfortable with it and won't torture yourself with what-ifs if you end up without more kids, then I would.

Sometimesithinkimbonkers Fri 19-Feb-16 02:47:43

Is autism the end of the world?
A patent is someone who accepts their child no matter what! Disability is not the end of the world ... It's just another way of parenting.
We have never had any genetic tests (until DC was born) because it was never ever worth the loss of pregnancy !

Oooblimey Fri 19-Feb-16 19:20:58

Hi,
I'm suprised they have offered to defrost, test and then refreeze, I was told with our frosties that they wouldn't survive the process. And I can't lie, I've copied and pasted most of below from a thread I wrote on earlier re Genetic screening, so if you see that thread you're not having de-ja-vu!!

I have just had my two frozen blasts put in, they've not been tested as we had them left over from ICSI last year before we knew about the translocation. For us to have the whole screening thing it would mean a lot of travel, and having done the ICSI thing in the past we thought, sod it, we'll take our chances with the frosties, if I MC (which I am prepared for and expect to!) then we will do ICSI again with the PGD later in the year.

I've not been through it yet but I have a friend who has. I would advise to ask exactly what they are looking for, some clinics, and especially if they are NHS, will only check for your specific translocation but not other genetic abnormalities. (my last MC fetus was tested, it had didn't have my hubby's chromosome issues wth 13 & 17 but randomly had a whole extra 16 hense the MC!) Some clinics will check for everything, which sounds great but it may mean none being "normal" (this happened to my friend) and some of those "not normal" ones potentially might have been something very mild and resulted in a perfectly fine baby (maybe just with the tranlocation gene for example) At the end of the day you need to do what you are comfotable with and sod everyone else.

deliverdaniel Fri 19-Feb-16 20:12:57

Thanks everyone- I thought no one had replied and then checked back just now to find all this. Really appreciate your responses.

sometimes no autism is not the end of the world, but I have seen it close up with family members and it definitely puts a strain on the family, adn with three kids I would like to minimise this chance.

The clinic have now offered an alternative, which is to defrost, biopsy then genetically test overnight (24 hour turnaround) and do a transfer of any normal one the next day. Not sure what the relative risks are of keeping the embryos alive in the lab an extra day vs refreezing. Feel like I"m driving myself crazy! I know that there's a strong chance none of them will be normal and there will be nothing to transfer but i'd rather knnow that in advance probably than have 4 miscarriages. ARGH such a tough decision.

Anyway thanks so much for your responses. Good luck to all of you too.

Shellster52 Sun 21-Feb-16 22:42:47

Let us know how you get on Deliver. Will be thinking of you. What makes you feel like there is a strong chance none of them will be normal... especially after you have DC2 from this batch of embryos?

deliverdaniel Mon 22-Feb-16 22:07:59

Thanks so much shellster I think I'm being superstitious. The Dr told me that statistically 50% would be normal, but we have in total transferred 6 embryos (across 2 fresh and 1 frozen cycle) to get DC2 so I'm not counting any chickens. really appreciate your kind words, and good luck to you too!

Shellster52 Tue 23-Feb-16 21:39:52

Can totally understand your pessimism after it taking 6 embryos to produce 1 pregnancy, and can only imagine that those two miscarriages must have been heartbreaking and that PGS would certainly put your mind at ease if you did get another BFP. I had an early m/c on my 10th IVF attempt and I think it was more awful than those who conceive easily because I really doubted I would ever get the chance again.

Is cost a consideration in whether to do PGS? I am in Australia and here the embryos get flown to America and it costs a fortune!

deliverdaniel Tue 23-Feb-16 22:35:01

oh poor you shellster that must have been devastating. So sorry. We are actually in America so it is cheaper here (not cheap but around 2k so I think cheaper than elsewhere.) It would be cheaper to do the PGS than have 4 FETs that didn't work out, so cost wont' be the main consideration. Really good luck in the future. Thanks for replying.

Shellster52 Fri 26-Feb-16 02:46:55

Wow, 2k is cheap! Well, definitely not cheap when there are those that fall pregnant at the drop of a hat while we fork out thousands on IVF treatment, but certainly cheaper than here in Australia. I don't know the exact figures as I never did PGS, but I spoke to someone who did and it was at least 10k from memory.

Makes sense for PGS to be a consideration then if you compare it to 4 failed FET's. Again, good luck with your decision. Have you got a timeline for your FET that you have to make a decision by?

miamiaMo Sun 28-Feb-16 16:50:06

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

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