Preimplantation Genetic Diagnosis-Baby's Beginning

My experiences of concieving our first child using preimplantation genetic diagnosis

Tuesday, November 13, 2007

Storks sure complicate things!

We had our first official PGD consultation with Dana this afternoon! :) It took about two hours. She explained the whole process to us again, and answered our two pages of questions.
  • For those of you with IP who are wondering - It is possible to do PGD without a second sample from a family member, in some cases. Unfortunately, I can't be more specific than that. In any case, if you don't have a second sample, it will probably lower the accuracy of the genetic testing. However, depending on the size of your gene deletion, they may be willing to work with you on a sort of shared-risk basis, where you realize that the testing is not completely reliable. It's done on a case-by-case basis. So make sure, if you have a miscarriage, to save a sample! Even if you're not sure if you want to do PGD in the future, you only have one chance to save it. Better safe than sorry!
  • About whether the eggs or whole embryos will be tested - we won't know ahead of time. It's not an absolute thing, it depends on how the test goes for each individual egg. They will test the eggs alone first, and if the results are clear enough to give 98% accuracy, then they won't test the embryo. If not, they test it, too. So most likely we'll end up with a final group of embryos that include some that were tested as an egg, and some that were tested as both an egg and a whole embryo, all of which have at least a 98% accuracy rating. For those that were tested as an egg, we won't know the genders. For those that were also tested as embryos, we will.
  • If we want to test the embryos that were only tested as eggs to find out the gender, it's an additional $500. They also offer optional full chromosome testing for an additional $2,000.
  • Dana will write a letter of "medical necessity" for us to give to our insurance company to try to get the PGD covered, too.
As far as the additional chromosome testing goes, we're thinking that we probably won't do it. It would be nice, but really, we're not at risk for any other problems, it would cause additional trauma to the embryos, and it's an extra $2,000. It's an extra, not really something we need, so we probably won't do it. We probably won't do the extra gender testing either, because of the additional trauma it would cause to the embryo. Every time you take a sample, it puts the embryo at more risk, so if it's not necessary, we probably won't do it. We don't care about the gender for a single baby, however, we know we're at risk for getting twins again. We only want to have two children, one boy and one girl, so if we get twins, we'd really like to have them of opposite genders. So, maybe we will do the additional gender testing...we have to think about it some more. Probably some of our final embryos we will know the gender anyway, so it won't require additional testing.

To-Do List:
  • Dana wants a faxed copy of our insurance card
  • The paperwork that Dr. Tur-Kaspa's office emailed to me was just a privacy statement, request for a copy of our insurance and picture ID's, and a general health and fertility health history form for both my husband and I, about what you'd expect.
  • We both have to submit DNA samples (blood samples) and consent forms, and a $3,500 PGD setup fee. The fee is for our genetic testing, and for designing our PGD test program. A different testing program is designed for each couple, based on the specific genetic disorder and their DNA. This fee covers that cost. It doesn't include the egg/embryo testing, only the design of the testing program. We have to pay this cost ourselves when we submit our DNA samples, then we can try to get reimbursed later from our insurance.
  • We both have to have several tests done, mostly fertility-related tests on me (hormone levels and what not), and have the results sent to RGI. We're planning to wait until my fourth cycle after my miscarriage to have this done, since I want to be sure my body has returned to normal for setting my baseline record.
  • I won't be able to do my monitoring with an OB/GYN for a couple reasons. Some tests may have to be done on the weekend, and OB/GYNs normally don't do that. I'll have to go to a fertility clinic here. Also, it's better to go to a fertility clinic since they're more familiar with the protocols and whatnot. So we'll be going to the Washington Center of Reproductive Medicine for both our testing and my monitoring.
There's a lot to think about! I'm getting more scared about the hormone drugs. There's so many of them...It sounds like I'll have to give myself injections for awhile...!! I can't do that! I'm just trying not to think about it. I don't know what I'll actually have to take yet. It will depend on my test results. The medications are different for every individual. Since I'm young, hopefully I won't have to take as much as some of the other ladies I've chatted with online...I'm just trying to think that once I have our wonderful baby in my arms, I'll forget about all this stuff we had to do to get there...

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