So I just had a phone conference with the genetics counselor who would be doing our PGD for the sickle cell thing if we decided to go through with it. Well first we were told it cost $2500. Then when I get on the phone with her she says its $3750. I'm like okay, we were told $2500 and she said oh that must be an old sheet. Well um okay. Then she tells me it takes 4-10wks for them to build the test to be able to test our embryos for the sickle cell and beta thal string that we carry. She said she would need cheek swabs from DH and I, his mom & dad and my mom and dad. I was like okay. I told her I'm do to start stims on March 11th and ER will be around March 22nd. She said I can't guarantee that the test will be built by then but if not you could freeze them until we are ready. I was like we don't want to freeze. She said well you could start with your next period instead of this one. I told her thats not possible as I've been on medicine for 3 months working up to this and its not as simple as just pushing it back to my next period. She said well, it could be done it could not be done....its really hard to tell. So I asked her I was like if we went ahead but then we didn't have enough embryos to send for PGD how much of the $3750 would we get back. She said you would get $250 back which is the courier fee. She said but what do you mean what if you don't have enough embryos to send we will test even just one embryo. I said I'm not and my RE is not willing to risk my embryos if I don't have enough good quality embryos, so we would want at a minimum 6 good looking embryos. She was like oh, well thats a personal preference we will just test one if you want it tested. So I was like if after the egg retrieval we decide its not enough to go through it we are out $3500 and she said yes unless you decide to come back and use it at a later time and then you would only pay $2750 the next time. WTF! So I was like do you still take the 4-10 weeks just to test if the embryo is chromosomal normal. She said why would you test to see if it is normal if you won't test to see if it has sickle cell. I said I was just asking you a question on whether the time line to build the test is the same. She says well I don't know we don't do that test here you would have to check with another lab. I was like alright, let me talk to me RE and I'll give you a call back later.
So I call and speak to my nurse and she was saying we were hoping they wouldn't have to build the test that they would have one already on hand. I said well she said she was looking at the files I faxed and they would require a test to be built. She said she was going to double check and see. I told her my second concern was this money thing. I told her everything that she said about not getting nothing but $250 back out of $3750 if we didn't have enough to go through with PGD and she said she understood. I told her especially looking back at my previous cycles, there is no guarantee that I will even have enough to go through with PGD. She said she understands and it can be my call. She said its not like DH and I both have sickle cell trait and it would be a higher risk of us passing the sickle cell disease on, but she said we have two different forms and with a small possibility they could link up but the chances are very small. She said because I have beta-thal trait and DH has sickle cell trait, they are different but could possibly link up which is why they were suggesting PGD but the possibility is small. She asked me what I was leaning towards. I said I'm not sure what kind of response I'm going to have from this cycle and I'm not trying to just throw $3500 away and hope and wish that I get enough to test. Then the test is not 100% guarantee. Its a 2-3% possibility that the test can be wrong, not to mention the inclusive it gives and the ones that they can't even test because the cell dies or gets damaged in the process.
So my RE supposed to be calling me so we can discuss this, but I'm highly looking at scraping the whole idea and believe and pray that we get a normal healthy baby.
ETA: Spoke to my RE, he said it is our decision and he understands. The RE asked if we would be open to testing after pregnancy...CVS and whatever the other one is called and I said yeah we would. He said would you be willing to terminate the pregnancy if you found a disability in the child. I said no we wouldn't. He said okay. He said, it was our decision and he would support us with whatever we decided. Spoke to DH about it tonight. He said he doesn't want to do PGD anymore. I asked how he felt about testing after I was pregnant, he said really didn't matter to him, if I wanted to it was fine. I asked if he would want to terminate pregnancy if the baby ended up with sickle cell disease or some disability. He said nope, not at all. I love him. And I know that God won't place more on us than we can bare. So we will just continue to pray that we get a healthy baby who is sickle-cell free and if we get tasked with something different, we will love and care for the child all the same.