Advice, please: evaluating fertility clinics

My husband and I have decided (after nearly ten years) to try to have a child. The wrinkle (and a large part of the reason it took us ten years to get to this point) is that he has a rare degenerative bone disease, the gene for which is carried on his X-chromosome. In order to minimize the chances of passing on his disease (it’s a dominant trait), we need to take advantage of pre-implantation genetic screening (PGS): my understanding is that they can look at the embryos at 3 or 4 days and select only those that do not carry the gene (in this case, the boys).

I’m finding it very difficult to get good information. Although our issue is not (AFAIK) infertility, we need to go through a fertility clinic, as they are the ones that do the procedures. There are several clinics in my area (Dallas/Ft Worth) that offer PGS/IVF, but I don’t know how to evaluate them: I can find “success” data, but I don’t know what it means–it seems likely to me that that data could be massaged in various ways, but I don’t know how.

In a perfect world, I’d get pregnant next October. I think this means I need to start seeing doctors early this spring, though even that is an educated guess on my part. I suppose my questions are:

  1. What is a normal time line?
  2. What sorts of questions should I ask the doctor? What answers do I want to hear? What red flags should I look out for?
  3. Does anyone have any specific information about doctors in my area (DFW)? I can read all their websites, but that doesn’t really tell you much. Are there websites where people review fertility clinics?

My instinct is to pick the three clinics with the best data/highest number of procedures and schedule new patient appointments with each. But I am sure there are things I am not even thinking about. This is really a new world for me.

Any advice or anecdotes are much appreciated.

The main problem with the data is that patient populations can differ between clinics. The data is given by various age groups, but other than that it’s hard to know whether one clinic tends to discourage patients who have worse odds. However, it’s still a somewhat useful way to evaluate a clinic. As you said, go with the ones with the highest volume. I feel that three might be overkill, but that depends how much time and money you have.

Speaking of which, money might be another factor here. Are you paying out of pocket, or using insurance? If it’s out of pocket, you probably want to compare prices, and if your insurance covers it, they may only cover certain clinics.

As far as the timeline, you probably want to have your initial appointment about 2 months before you plan to start the IVF cycle, maybe a bit longer if you plan to compare a few centers. Generally IVF cycles start a while before the actual ovulation induction - you take hormones antagonists for a few weeks to suppress your natural hormone production, although the protocols vary between clinics.

Hmmm… what else… try to find a place which has been doing PGD for a while. You might want to investigate whether they are able to screen for the actual genetic defect, rather than the relatively crude method of excluding all the female embryos. Some PGD centers are able to make customized genetic probes to detect specific abnormalities.

My understanding is that PGD specimens are generally not done in-house, but are sent to a lab somewhere. I know that our clinic would have sent them to New Jersey (we ended up not opting for PGD due to a small number of embryos - our issue was straight infertility, so we would have been using it only to try to enhance our ability to pick the best embryos to transfer). So ask about the PGD lab, and see if you can talk to a doctor there, as well as talking to the doctors at the clinic. We had an extensive discussion with the guy who would have done our PGD if we had opted for it.

I found the forums at IVFConnections.net to be very helpful. I would caution you not to go bouncing in and announce that you’re not infertile - you may get outright hostility. I got a bit of flack for asking some questions about secondary infertility (no problem conceiving my first; IVF for my second) in an area not devoted to it. Lurk for a little while to get a feel for the place, or just search the message boards for your area - you may never need to post at all to find what you want. You definitely will be able to ask your question, but there are some people there who are feeling very wounded, and you’ll have better luck with their responses if you try to be sensitive to their quirks.

Shmendrik, screening for sex in order to exclude a sex-linked defect is not a crude method in this case. If Manda JO’s husband has a dominant “bad” gene on his X-chromosome, it will be present in every female embryo and zero male embryos.

Good luck to you Manda JO! I hope that everything works out, and that we’ll be reading about your baby boy in the summer of 2011.

Oops, I missed the part about it being dominant.

Thanks for the advice and the links. It’s such a high-stakes game, emotionally, that it’s hard to get rational information.

PM’ing / emailing you.

I sent you a PM also.

I only want to say that you may need to try more than one clinic before you find one that suits your needs. We made a few appointments with one clinic, but my wife didn’t like the doctors there, so we switched to another one based on some recommendations. We’ve been with the second clinic for about two years now and with their help we are going to have a baby very soon.