Should we PGD? Failed IVF, D&C Spontaneous, Lots of Trouble


#1

Hi all, I posted about a year ago as my wife and I went through our first IVF cycle which regrettably resulted in a failure. We were about to start our second IVF with a different doctor using a protocol that I felt better about, but we randomly got spontaneously pregnant the month prior to our scheduled IVF (we weren’t trying either). However, we got the bad news today that the baby’s heart stopped somewhere in the 8.5-9 week timeframe, so we’re now asking ourselves our next steps. Here’s a summarized version of our history:

  1. Been trying to get pregnant since Q1-2011 time frame. (We are now (Oct-2013) both 31, almost 32). My wife watched her cycles and we tried to time it, but we weren’t crazy diligent about it, and my work travel interfered a handful of times
  2. In Q1/Q2-2012 we did 2 or 3 IUIs with no success
  3. Q3/Q4-2012 we planned to do IVF. Blood, SA and Eggs all seemed good, we had been diagnosed with unknown reasons most likely related to a surgery my wife had at 12 years old due to significant surgery to her stomach area. Although no test could confirm any issues, it was assumed possible scar tissue somewhere.
    3b. Last November we did IVF on a pretty weak med protocol and netted 10 eggs, 8 mature, all fertilized, put a grade-A 8-cell and grade-b 9-cell in on Day 3. No pregnancy, none of the remaining, lesser quality eggs made it to blast. The doctor had nothing to really offer us afterwards except bad luck and/or possible genetic issues

After that we decided we’d do IVF again in the following year. We didn’t really try to get pregnant as we felt there was no hope.

  1. Q3-2013, new doctor and new IVF protocol planned for Nov-2013. Hopeful to get better quality eggs and go to blast with a better lab, better doc and better protocol (antagonist)
  2. September 2013 - Wife misses period, blood test maxes out HCG. It was random luck/timing. Yay, exciting times!!!
  3. Three sonograms, Sept 25th, Oct 2nd and Oct 15th, all show good growth and strong heartbeat. All with IVF doctor, he sends us to our OBGYN. Life is well!
  4. Day after Oct 15th (our 3rd wedding anniversary) sonogram, doctor calls and reports slightly falling progesterone. Went from 23 to 17, but still within range and were told not to worry. We went on a planned vacation and returned.
  5. Today (which should be close to 10.5 weeks), moved to new OBGYN, no heartbeat. Doctor says baby stopped around 8.5 weeks which is right around or very shortly after our last sonogram which had a 165bpm heartbeat.
  6. D&C planned for Friday, will do genetic testing on fetus (any idea on the cost of that, not sure my insurance will pay. My insurance is good, but they don’t pay for IVF specifically, but other things they’ve paid for (hysteroscopy, etc.).

So that’s where we stand. For two healthy people with no real diagnosed problem, the thought of possible chromosomal issues becomes a bit more obvious to me. I guess we’ll know more after the fetus testing, but under these circumstances, does PGD and IVF make sense? Of course we’ll still try naturally which to date has yielded the best results, we will also consider IVF again, especially if needing PGD.

I didn’t pay much attention to the protocol of PGD and/or what testing needs to get done, what that costs and what the expectations are. My wife starts a new job tomorrow and it is rumored to have excellent insurance with IVF covered, but we don’t know. We paid cash and planned to pay cash for the canceled IVF, so obviously wasting money isn’t high on our list, however, at the same time we can afford this with not too bad a hit on savings, but given our past, it seems something is stopping us too frequently. If anyone has recommendations or insight on that, it’d help a lot. I found reading and asking here put me in a much more informed state when talking to doctors rather than just listening and being overwhelmed. From a genetic standpoint, some doctors had said we probably have small likelihood of any genetic issues as we have no family histories of issues, she is of Asian descent while I’m of mostly German descent. Any advice on our overall history is welcome as well.


#2

My gut says PGD probably wouldn’t be worth it to you. It costs about $5-6000 and there’s no reason to think this last miscarriage wasn’t just a run of bad luck.

If you haven’t already check out the SART website for the clinic’s you’re looking at. I would make sure they have good numbers compared to thei competitors and that they do a decent amount of cycles. [URL]http://www.sart.org/find_frm.html[/URL] The right clinic can make all the difference. If money’s not much of an object, look throughout the country. The best IVF centers are head and shoulders above all others. I don’t know how old this article is, but I think many would agree that CCRM is still the best. [URL]http://www.parents.com/getting-pregnant/infertility/treatments/best-fertility-centers/?page=2[/URL]

P.S. Your progesterone was within a normal range. But, next time, there’s no reason not to be on supplemental progesterone. I doubt it would’ve made a difference, but it doesn’t hurt. IMO


#3

Hi, I don’t really know much about PGD, but I think it runs in the $4000-6000 range. You and your wife are still young enough that the odds are still in your favor for chromosomally normal embryos. You may want to see if you and your wife could get karyotyped to make sure that there’s no genetic problems in yourselves. (Karyotyping looks at the chromosomes.) I’m sorry for your loss. I had a natural pregnancy that miscarried myself right after I first saw a fertility specialist so I know how much that loss hurts. I finally got my baby after 3 IVFs, and the odds were against me since I am in my 40s. I wish you luck in your next attempt whether it is natural or IVF.


#4

Thanks, yeah I’m curious what testing we should do to get started. In regards to the clinic, I was unhappy with the first one, which is the largest in our area. A new one, which is spunoff of a large IVF clinic in Houston has good #s. 62.1% transfers into pregnancies for example. 2011 was their first SART year with 100 procedures (only one doctor). He shared the 2012 numbers with my unofficially which was more like 160 and maybe 59%. He’s the best we’ve worked with and it’s convenient. We thought about going outside the city, but I’m not sure it’s necessary at this point, I’d like to give this guy a shot.

The more I read, the more it seems we maybe just have had bad luck, had a good go with it and fell in that 5% who miscarry after a heartbeat. Quite a sucky sequence of events, but there are people in worse off conditions and in someways we can look at being more hopeful than before as we’ve gotten quite a bit further with no help.


#5

You could also look into having a recurrent miscarriage panel run on your wife, though I don’t know whether your doctor would do it after just one miscarriage. It mostly tests for clotting issues. Hopefully, this was just bad luck. At least you may get some answers with getting the fetus tested. We weren’t able to do that with ours (no tissue left after going to ER gushing blood).


#6

Cooper, I’m sorry to hear about the miscarriage, but I think you guys are in pretty good shape from the sounds of things. You are both young, you’ve only had 1 miscarriage, and it sounds to me like your IVF costs are rather marginal due to lower levels of meds. I don’t think PGD is relevant at this phase in the game for you two. It makes more sense to spend the cash that you would have spent on PGD on more meds, instead. That would give you probably double the eggs which translates to higher quality embryos. For older patients with higher costs, PGD makes more sense. Good luck.


#7

Hi there- First, I am very sorry for your loss. I saw your post and wanted to comment as I am the same age as you and your wife, and I did IVF solely for the purpose of PGD. My husband and I were not diagnosed with fertility problems but did PGD to prevent passing along a rare genetic condition. But we also screened our embryos for other conditions which could cause miscarriage because we figured, why not screen for everything to guarantee putting back a healthy embryo. The first two cycles didn’t work and we were devastated. Especially since we were told we could get pg on our own without ivf. My clinic was also a large well known one and my Dr had no answers except keep to trying and sometimes it takes up to 7 tries! I didn’t have unlimited time, money, or energy to keep going through ivf cycles blindly and so that didn’t sit well with me. I switched to a reproductive immunologist named Dr. Jeffrey Braverman and got pg on the first try! From my own personal PGD experience I can tell you that many human embryos are abnormal (even those that make it to grade A blast, even for us under 35 year olds). I had 13 eggs retrieved, 10 made it to grade A quality hatching blastocyts – 6 of them were abnormal and would have resulted in miscarriage. (That is abnormal generally, not just for the specific condition we were testing for). But they appeared on the outside as excellent quality. We transferred 2 normals, and I am pregnant with one:) I highly recommend PGD, and I HIGHLY recommend Dr. Braverman. He’s amazing. Best of luck to you and your wife!


#8

I guess we need to learn more about PGD. It just seems that it has been so difficult to get this far considering no other detectable issues. The new IVF procedure we were about to do cost quite a bit more due to ICSI requirement, more meds, etc. We’re not made of money, but I’d like to optimize our chances within reason.

Congrats to all, we were also expecting to deliver in May-2014 :confused:


#9

Cooper, the genetic testing on the fetus on Friday will probably do more for you at this moment than a PGD (because it shouldn’t be very expensive). Were the PGD free, I’d say go right ahead, but it isn’t. Honestly, at this stage in the game, what you’ve experienced so far falls into the realm of reasonable statistical probability which is why they typically don’t start digging deeper until a second miscarriage. That doesn’t mean you shouldn’t take every measure available to determine whether there might be something else wrong, so long as those means are covered by insurance or aren’t terribly expensive. But either way, keep your chin up. It’s a bit uncanny, but your situation is very similar to mine. We’re the same age, my wife’s ovaries and fallopian tubes were damage in a surgery when she was younger (and as a trivial detail, she’s even “asian” and I’m swiss german too, lol), our first cycle failed, then not long after, we got pregnant naturally (which didn’t work out, in the end). However, on our second cycle we succeeded. Reading your first post was actually a little bit terrifying because my wife is at 10.5 weeks as we speak :confused:

I think you just have to keep trying. Your strategy right now is pretty good: continue trying to conceive naturally and commit to IVF when possible. The process of IVF itself will actually reveal a lot about what problems you might have. I would personally recommend that you post the details of your circumstances in your signature so that people on these boards can give you more informed responses. Mention all of the important stuff about your journey so far, like known issues and even the physical conditions of you and your spouse.

Also, just out of curiosity, I’m wondering whether you’ve done any DNA analysis on your sperm? I guess I’m just wondering why you are doing ICSI if your sperm are apparently in good shape.


#10

Demian,
Congrats on your story!!! We do sound similar. I’ve had 2 SAs done, but not with DNA testing. The only reason I said it was ok is both of those results came back good with above average counts, motility, etc. The reason we’re doing ICSI now is that the IVF doctor we chose pretty much only does ICSI. It’s built into their cost, and you get no discount for not doing it. He says about 5% of people don’t do ICSI but more for personal preferences and natural selection, etc. It’s just their standard practice, that is all.

As far our our overall health, other than things like seasonal allergies, we are both healthy, quite fit, we’ve never smoked in our lives, etc. We have low body fat and very low blood pressure, etc. I guess the only issue I have is that I was diagnosed with gout due to high uric acid despite no dietary, health or hereditary reasons, but it is well under control with Allopurinol which has no links to infertility. Also, I was just diagnosed about 5 months ago, so it predates our problems.

I’ll have to look into the DNA tests.

Cheers


#11

Yes, more specifically, look into the Male Reproductive Health Panel. I honestly [I]doubt [/I]that you have any DNA Decondensation issues, but you never know. Some men with apparently 100 percent healthy sperm in fact have internal issues with the structure of their chromosomes. The test costs around $700 so it could be a worthy investment. Also, are you familiar with your prior clinic’s success rates as well as your current clinic’s success rates? You seem pretty thorough so I imagine you’ve checked up on that already, but remember that not all success rates are created equal. A clinic that takes a lot of older patients or patients with diminished ovarian reserve will have relatively lower success rates even if they are a superior clinic that yields superior results.

Also, it might sound arrogant for me to say something like this, but some clinics have mediocre embryology labs. Or heck, mediocre staff. An RE, nurse, or embryologist will NEVER admit that they made a mistake for liability reasons, but mistakes happen frequently. IVF is an adapted skill in many respects and an IVF cycle can be botched by inexperience or carelessness. The only weapon you really have in your arsenal as a consumer is statistics on their success. Also, try to discern whether a clinic is resorting to “questionable practices.” There are scores and scores of clinics that rely more on non-peer reviewed voodoo (and when you actually looks at their success rates, it shows). This will probably rub a lot of people the wrong way, but I’ve noticed that clinics which rely on things like acupuncture, herbs, and stuff like “royal jelly” to the exclusion of rigorously studied medicine tend to have significantly lower success rates.

Also, as an aside, have you checked to see if you and your wife might have some kind of immunological incompatability?


#12

Thanks for the reply again!

I’ve only focused on success rates of <35, that is where the 62.1% quote came from. Our old clinic, while doing 1000 total IVF (all age) in 2011, only had a 45% rate. They run the same protocol on all women which by my research is a pretty safe protocol that has been around for a while, but it doesn’t yield the best results. It was a standard Lupron+Gonal-F protocol. I heard from another doctor in the business that the reason that clinic uses the same protocol on all is because they have so many patients and 3 doctors so they can all cover each other easily and there’s no need to know any very specific protocol stuff. The new clinic we found uses Antagonist protocol. In our first IVF, we only spent $2k on drugs, in the planned one, we were looking at $5k, just to put that in perspective.

I agree whole-heartedly on the lab. In fact, I actaully grew concerned during the transfer at which I was present in the first lab. The doctor had some issues getting the instrument inside my wife’s uterus and there was a ~30 second delay as he got another tool to help get it in there. Meanwhile, the lab tech was standing there with the embryos (2) in a well cooled room just waiting with no heating. I asked the IVF doctor and he said it was a non-issue, but I knew he wouldn’t admit anything. He actually seemed a bit frazzled as he was yelled with nervousness and urgency, “Get me the XYZ-tool”. I asked our new IVF doctor about that and he said that it sounded like bad practice and that he always puts a catheter like instrument in ahead of time, then calls the embryos from the warming plate and it is already to go with no delay.

To your other points, we’ve done no genetic testing, no detailed DNA testing, no chromosonal testing, etc. We’ve basically done none of the optional things because it had always been assumed we had some scar tissue and transport issue, and the basic tests and hysteroscopy showed good sperm counts, motility, etc., good egg quality and count, great uterus. Since we got naturally pregnant, it begs to ask if there really is a “plumbing” problem and if there’s a more severe compatibility issue and we just got lucky this last time but there was still some genetic defects that showed up anyhow. That’s the pessimist in me at least. On the other hand, my wife had just started taking CoQ10 right before conception, so maybe that’s the trick :wink:

On a final note, our OBGYN today asked my wife’s blood type. She didn’t know it. I’m nearly positive I’m B+, my parents will confirm shortly. Even though this is her first pregnancy, 18 years ago she had massive blood transfusions due to her accident. It’s possible she got some Rh- blood that was sensitized and got passed to her. Although I read now that that would only cause later term miscarriage so maybe not related, but the doctor today ordered a blood and antibody test. May not be relevant now, but it might be something we need to watch out for in future pregnancies as RhoGAM shots may not work on her if she’s Rh- and has transfusions. I’m likely over-analyzing every detail now, but that’s in my nature.

I really appreciate your help and advice. I guess I’m trying to figure out where to start with any genetic testing (outside of the fetus exam). I recall my insurance not paying for my normal sperm analysis, so that’s probably on us to cover. Ironically, my wife starts a new job tomorrow at one of the largest companies in the world which supposedly has exceptional insurance with some IVF coverage, so we may get some relief there with our future plans.

Cheers

PS - Update, we found blood tests, we’re both rh+ so that whole possibility is a non-issue


#13

I would agree with Hopingfortwins. Although the pgdis expensive, in a long run will save you multiple ivfs.plus, check for clotting and immune issues, like hla matches


#14

Cooper, gosh, what a terrible clinic you did your first cycle at. It sounded like an IVF mill. Sadly, “industrialized” IVF, where everyone (including the patient!) is an interchangeable part, is all too common. A lot of the time, you don’t even see costs come down due to their standardized methods. You need an RE like the RE we had. He poured over our person history, personal circumstances, etc. and developed a strategy tailored to us. But even though our clinic had 62-65 percent success rates, they still made mistakes. If a clinic that good can make mistakes, imagine a bad one.

And your transfer? Yeah, its a very sensitive procedure that can easily be bungled, so I wouldn’t be very surprised if they improperly transferred your embryos. Even if the embryos slid out of the cathetar and on to the floor they’d still pretend like it went in. A good clinic will show you the transfer occurring on the ultrasound screen. At any rate, It sounds like your new clinic will get things right.

Also, I’m not sure how familiar you are with aneuploidy, but it can happen to pretty much any embryo regardless of whether there are any negative traits being passed on by you or your spouse. So I guess what I’m saying is that not all genetic defects are created equally. Aneuploidy is an issue that arises usually because of flaws in meiotic division when egg and sperm are maturing. Spindle fibers latch on to too few or too many chromosomes and drag them in the wrong direction, leaving one gamete with too many chromosome and another with too few. But most other genetic defects are germ-line.

Aneuploidy can cause miscarriage early in pregnancy but often times not before you transfer your blastocysts. It happens less frequently in younger people and is more and more common the older you get. PGD’s biggest service to success is that it allows you to see ahead of time whether certain embryos are destined to arrest due to aneuploidy, but younger people are much less likely to have arresting embryos, and if you are transferring two its very likely that one will be healthy. If you are 30-35 years old and only get 10 eggs and you end up with 2 blasts, it’s pointless to do a PGD because you are transferring two anyway. Even if you have 4 blasts, its probably not worth it. However, if you are 42 and have banked 20 eggs and end up with 6 blasts, then PGD is a good idea because most of the blasts are probably aneuploid and you want to be sure you transfer the good ones (not to mention, you know whether the embryo would have Turner’s Syndrome, Down’s Syndrome, and other conditions that are more likely to arise with older eggs). With your antagonist protocol, if you end up with tons of eggs and tons of blasts, PGD might be a good idea, but consider that most of those embryos are probably a good bet anyway, you have to do a cost benefit analysis. PGD will always increase your odds, but the opportunity cost of a PGD in your case is about equivalent to a frozen IVF cycle.

Hope this wall of text helps.


#15

Oh, and one more thing:

It might be a good idea if both you and your spouse screen your DNA using a company like Counsyl. They’ll tell you what heritable diseases you have, are a carrier for, etc. It’s really cheap with insurance and is very insightful.


#16

I would also add that careful lab is also a must since the careless dealing could dedtroy excellent embryos. As for the age and blasts, it is not a rule to have healthy ones if you are younger. it depends what the infertility cause is.if there is a morphology issue or egg issue involved, even the 2o year old people will not have as many healthy blasts as their peers who do not have those issues. At the age of 32, I got 12 blasts but only had 2 pgd normal. Then, out of 11, I got 3 normal ones. We have a male factor, but I do believe those hormonal drugs make damage as well as what we eat.


#17

I am really sorry to hear about your miscarriage. I am not sure I would do PGD. You are still young, thus, the chance that you need it is slim. It is also very expensive. My guess is you were just unlucky this time around. As for clinics in Houston, be careful on selecting on success rates. I have cycled in Houston and I have researched this extensively (I am a really hard patient, so I am turned away often). I found that a lot of the clinics around here screen out the harder patients in order to artificially increase their success rates (the only one I found that did not do this is HFI). Thus, it is risky just to go on those alone. I saw someone suggested CCRM to you, which I think would be a great option. The good thing about living in Houston and cycling at CCRM is that your monitoring can all be done at Houston IVF (they are affiliated somehow, but in my experience very, very different in terms of how they treat patients and the patients they turn away) and it will be included in your package price for CCRM. Thus, you end up spending not that much time in Colorado and there really isn’t much added expense (just the travel, which is really pretty cheap). If I were you, I would consider this option. If you were to go to CCRM, you could do PGD if you want more than 1 child and save the rest of your embryos for later pregnancies. If you only want 1 child though, I would save the money and just proceed with transfer.


#18

houston,
We are actually in Austin, and we originally planned to use HFI for our next go around, but HFI actually informed us that they recently started an AFI (Austin Fertility Institute). The lab is run by the same director and protocols, etc. are all similar. The fees varied slightly, but after our consult with HFI, we checked out AFI which we were unaware of since their first full year was 2011 and at the time of the consult, no CDC info was available. Now we see that AFI has better rates than HFI, albeit with less trials. During my research, something had turned me off about CCRM, but I no longer recall that.

I think for next steps, we’ll get the fetal exam, and I’ll look at having my sperm DNA fragmentation tested. Is there any other lower hanging fruit testing we should do?


#19

I know how frustrating it is when there are no other detectable issues. I was in your shoes not too long ago. There are great drs out there who can and will get you pregnant! You just need to find the right one;) And thanks for the congrats, I still can’t believe it!!


#20

All, we got the results of the biopsy and it appears to be Trisomy 14 from the male side (me). I’m doing some research, but I’m unsure if that is just a one-time ordeal/bad luck or something that would exist repeatedly in future attempts. Any insight would be appreciated.