Considering IVF with PGD after two trisomies

[Anonymous]

I have been pregnant three times:

38, ended in TFMR at 13w
39, healthy DD
41, ended in TFMR at 12w

Having two T21 pregnancies has been devastating. Some have suggested we try IVF with PGD, but I'm finding it overwhelming. We have been lucky to get pregnant easily (first try each time), so in theory we could try again. But if my eggs are crap, and it ends poorly again, I'm not sure I could try again after that.

I'm crushed after our second loss (and getting help with that.) I have an appointment at GW in a few weeks, but just the paperwork left me overwhelmed. It's only been two weeks, but given my age, I'm feeling some urgency.

Anyone has multiple chromosomal issues? Would love some support or encouragement. Thanks.

[Anonymous]

Just wanted to say I'm sorry, OP. That's really really rough. Personally, I'd probably be one and done since I don't think that I could take that kind of emotional abuse again.

Best of luck to you.

[Anonymous]

Hi, OP. I responded to your thread over in the expectant/postpartum moms forum. First of all, I'm so, so sorry you are going through this.

My DW TFMR with a T21 pregnancy in early 2015. Since then she's had one failed FET (with a PGS normal embryo), and two miscarriages (one was allegedly normal because we tested the tissue but that's still questionable because they didn't do microarray) and the second m/c baby had Turner syndrome.

After TFMR, we panicked and had our one frozen embryo (from that same batch) thawed, tested, and frozen, thawed, and transferred. It was normal. We are convinced that the extra thaw/freeze is what made it not stick.

After that DW couldn't get anything to day 5 so there was nothing to biopsy and nothing to freeze. We tried for at least two cycles and nothing. At that point we switched clinics and began working with Dr. Davis at Cornell who suggested forsaking the testing and doing a day 3 fresh transfer. We took his advice twice and she got pregnant both times, which both resulted in aforementioned m/c.

DW is now a patient with Dr. Braverman because we suspect there are immune issues. Interestingly she will be treated with lots of different drugs, and she did have a laparoscopy to treat suspect (and confirmed) endometriosis, but Dr. Braverman said no to PGS testing. He wants her to do an FET and only use what we freeze, but said do not touch those embryos despite the fact that 2/3 losses were chromosomally abnormal.

A couple of questions. Have you and your husband done any sort of genetic testing? Have you discussed this with a genetic counselor? And have you considered seeing a MFM doctor - Dr. Hammersley in Rockville is a good one. DW has already consulted with her and, god willing, if DW gets pregnant, she'll be working with her.

Unless you and DH have some sort of genetic incompatibility issue, I'd try at home again. Chances of two T21 pregnancies are so rare without genetic predisposition, so I can't imagine what chances are of a third T21 pregnancy (although I totally get that numbers/odds mean nothing when you have gone through this).

PGS can certainly rule out chromosomally abnormal embryos, but as you know, IVF is costly, time consuming, and emotionally draining. I can't imagine being where you are emotionally and staring down the prospect of IVF. It's daunting for anyone.

So step one should be genetic testing/counseling to get more specific information so that you can decide on next steps. IVF is f-ing hard, but if you truly want another child, you can do it. You can lean on each other for support and hopefully, one day, this will be less painful. It will never go away, and it will forever change the fabric of the narrative that is your life - but hopefully it will become easier.

We have one healthy child, and I understand the desire to want to complete your family in the way that feels right for you. When people (namely DW and my own family) tell us we should just be happy with one healthy child, it's so difficult because they are not in our shoes and they do not understand. But they mean well.

Good luck, OP. My DW will likely chime in with her own advice as well as some suggestions for supplements that might help with egg quality. I'll be thinking of you and wishing you luck and peace.

[Anonymous]

I just wanted to respond to the PP here - I was also a Braverman and Hamersley patient. I was her first Braverman patient and brought the two of them together. You are in good hands there Best wishes!

[Anonymous]

I wanted to respond to PP also -- what beautifully written and wise advice. I am also with Dr. Hammersley -- saw her today for the first time, in fact. Also immune and clotting issues. I was treated by Dr. Abbasi rather than Dr. Braverman but it's the same type of issue. We did an IUI and I am holding my breath until we can get the NT and blood testing done in 3 weeks. Your post -- especially about Dr. Braverman not recommending PGS testing -- helps give me hope that maybe it will work out this time.

[Anonymous]

OP here.

13:22, thank you so much. It's been a lot to get through, so one and done may very well be an option.

13:40, apologies for the delayed reply after your kind and thoughtful message.

You and your wife have been through a lot. Thank you so much for sharing your experience. I sincerely hope you are able to add to your family in the way you'd like.

We haven't been through specific genetic testing since the losses, other than initial screening for CF, Tay Sachs, and what GW called the "Jewish panel" because my husband has some Jewish heritage. Not sure what that covered.

Is there additional testing we can do that you know of? The genetic counselor said there was nothing in our full karotype either time that indicated it was a genetic issue. When I asked, "So it's just age and bad luck?" her answer was yes.

Thanks for the advice. I honestly don't want to do IVF, but the idea of implanting healthy embryos seems tempting. The thing IVF seems like it may be able to tell is is whether I have any healthy eggs, or whether this is just a fool's errand at 41.

That said, I read the other day most doctors don't want you to be breastfeeding for 3+ months before trying, so I'd need to wean my daugther and wait. Neither of which I'm really excited about. But I'm also not excited about another 12 week wait -- plus whatever it takes us to get pg -- to figure out whether it's viable.

Ugh. This all just sucks. I'm tired of having nothing but shitty options in front of me.

[Anonymous]

I'm 43 and doing ivf now with PGS (that's what you mean, btw, not PGD--PGS is broad testing for a whole host of genetic abnormalities whereas PGD is where the lab builds a specific test that looks for a unique genetic issue that you and your husband are passing along to embryos). If I could go back to 41 and go straight to IVF with PGS I would. My husband and I delayed because, like you, I had "no problem" getting pregnant. So I was somehow convinced that there was "nothing wrong with me." Sure I can get pregnant no problem. Sure my numbers looked good. And still no baby. Five miscarriages.

The truth is, as frustrating as it is to hear, that despite the fact that you have no other fertility issues, your eggs are 41 years old and most of them are chromosomally abnormal. They just are. IVF with PGS will give you the very best chance you have of getting pregnant. You will get access to a number of eggs--not just one at a time like you are doing now. That's a HUGE advantage. And you will be giving only the "normal" ones a chance to grow. Why spend the next few years continuing to waste precious fertility time. A few months to get pregnant, then a month and a half growing an embryo, then a miscarriage, then a few months recovery time. The time slips away. At 41, you have MUCH better chances than you will next year or the next. Please don't throw it away.

[Anonymous]

13:40 back again, OP.

In terms of other testing, we did some pretty extensive blood analysis once DW saw Dr. Braverman. We use a known donor so we were able to get blood from him to look at deeper compatibility issues (there were a couple, and Braverman and Dr. Vidali, the doctor who did DW's lap, think we should seriously considering using another donor's sperm, though that presents us with a lot of complex issues). Unless you want to go down the rabbit hole that is reproductive immunology, you might be at the end of your rope as far as genetic testing goes, but others may be able to correct me and/or have other thoughts.

You're right - it's awful to have some many shitty options in front of you. I say this not to be patronizing (because when people say this to me it often comes off that way and because we're in a very similar situation), but I really do try to find peace and joy in our one child. He is spirited and beautiful and just the center of our world - which is, I'm sure, how you feel about your child. The irony of it all is that we find ourselves saying - almost daily - God, I really want a sibling for him.

Just this weekend DW and I decided that we'll give it another 5 years or until we run out of money as we try for a second. If we don't have success having another child, we'll sell our huge house in suburbia (which we bought when she was between m/c #2 and #3 and which we bought in anticipation of having more children) and move overseas to live a different kind of life with our one child. So, having an idea of how far you're willing to go might be helpful (although that too can change).

OP, I'll be thinking of you. Seriously. Sending so much good energy your way, and peace so that you might find a way to move forward.

[Anonymous]

Anonymous wrote:I'm 43 and doing ivf now with PGS (that's what you mean, btw, not PGD--PGS is broad testing for a whole host of genetic abnormalities whereas PGD is where the lab builds a specific test that looks for a unique genetic issue that you and your husband are passing along to embryos). If I could go back to 41 and go straight to IVF with PGS I would. My husband and I delayed because, like you, I had "no problem" getting pregnant. So I was somehow convinced that there was "nothing wrong with me." Sure I can get pregnant no problem. Sure my numbers looked good. And still no baby. Five miscarriages.

The truth is, as frustrating as it is to hear, that despite the fact that you have no other fertility issues, your eggs are 41 years old and most of them are chromosomally abnormal. They just are. IVF with PGS will give you the very best chance you have of getting pregnant. You will get access to a number of eggs--not just one at a time like you are doing now. That's a HUGE advantage. And you will be giving only the "normal" ones a chance to grow. Why spend the next few years continuing to waste precious fertility time. A few months to get pregnant, then a month and a half growing an embryo, then a miscarriage, then a few months recovery time. The time slips away. At 41, you have MUCH better chances than you will next year or the next. Please don't throw it away.

THIS THIS THIS from fellow 43-year-old.
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[Anonymous]

Anonymous wrote:I'm 43 and doing ivf now with PGS (that's what you mean, btw, not PGD--PGS is broad testing for a whole host of genetic abnormalities whereas PGD is where the lab builds a specific test that looks for a unique genetic issue that you and your husband are passing along to embryos). If I could go back to 41 and go straight to IVF with PGS I would. My husband and I delayed because, like you, I had "no problem" getting pregnant. So I was somehow convinced that there was "nothing wrong with me." Sure I can get pregnant no problem. Sure my numbers looked good. And still no baby. Five miscarriages.

The truth is, as frustrating as it is to hear, that despite the fact that you have no other fertility issues, your eggs are 41 years old and most of them are chromosomally abnormal. They just are. IVF with PGS will give you the very best chance you have of getting pregnant. You will get access to a number of eggs--not just one at a time like you are doing now. That's a HUGE advantage. And you will be giving only the "normal" ones a chance to grow. Why spend the next few years continuing to waste precious fertility time. A few months to get pregnant, then a month and a half growing an embryo, then a miscarriage, then a few months recovery time. The time slips away. At 41, you have MUCH better chances than you will next year or the next. Please don't throw it away.

Thank you for sharing your perspective. It's what I'm leaning towards for the reasons you mention, but it's helpful to hear from someone who has btdt.

Are you doing IVF? Good luck on whatever you've decided on. 5 miscarriages is rough, either way. I'm sorry.

[Anonymous]

This is the DW of 13:40 - you've already gotten a lot of great advice here and honestly there isn't a whole lot I can add - I just want to send hugs and say I'm sorry you've been dealt this card twice. I am still reeling from my TFMR from a couple years ago. Stay strong and keep looking ahead, mama.

[Anonymous]

Wanted to send out some positive vibes. Husband and I did IVF with PGD after a 6 pregnancy losses. Although it didn't work, we did find out we had a TON of chromosomal issues (i.e. not a single issue) and we went on to have two genetically normal children without ART. The information we got from the IVF/PGD was helpful, mentally. Even if it didn't actually work we finally knew what was going on.

[Anonymous]

Also sending good vibes as I was devastated after my 12 week loss too due to a trisomy. I am so thankful I could then do IVF with PGS and figure out which were normal. I then transferred one and have a baby from that FET. I also went to GWMFM for monitoring and they were fantastic. I highly recommend PGS for people who have more than 4 embryos to test.

[Anonymous]

Just want to send along my positive vibes as well. I'm 41, couldn't get pregnant, went to IVF with PGS and ICSI. Only had two embryos make it to testing, one came back normal. That one normal one is now kicking me in the abdomen at 21 weeks. This has been such a long, trying, emotionally draining process. I send nothing but love and best wishes to you OP and everyone traveling down this road. xo

[Anonymous]

Thanks for all the encouragement! We had a consult at GW yesterday and are starting with blood work and other testing. We should have more information soon, which will be helpful.