Wednesday, May 25, 2011

Not the type of surprise I like

(Warning, this is going to be a long, detailed, post.)

I had my followup phone call with Dr. yesterday. (He does this after every phone consult, whether or not you're doing a cycle with him.)

Remember that in our first phone consult he wanted us to get tested for a possible DQ Alpha match; although he thought it was unlikely, he wanted to rule it out?

Well, we didn't rule it out. We have a partial DQ Alpha match. Dr. believes this, not my endometriosis, explains my elevated NK cell levels and TH1:Th2 issues. We thought we were dealing with diminished ovarian reserve and immunological issues that were manageable. Instead we're dealing with diminished ovarian reserve, and a ~50% chance per embryo that I can carry it to term, even with managing the immunological issues.

My understanding in layman's terms is that the DQ Alpha gene from the paternal side sends a signal to the mother when the embryo is trying to implant, telling the mother to recognize this embryo as "safe" (e.g. don't have your immune system attack it). If the DQ Alpha gene happens to match the mother, then this signal gets confused. With a partial match, 1 out of 2 embryos will match (there are 2 genes that provide this signal, and one gets used in the sperm contribution to the embryo). With a complete match, 2 out of 2 embryos will match. Matching embryos are very unlikely to survive to birth - the NK cell activity gets higher and higher, and eventually Intralipids can't control it.

Since I'm not a doctor, and that's just my understanding of how this all works, here's a link to Dr.'s recent blog about this topic: Understanding Immunologic Implantation Disfunction"

What this means for us is that a CGH normal embryo will still have only a 50% chance of being compatible with me. And because the match is between the sperm and the uterus, not the sperm and the egg, it means donor eggs aren't a solution - I'd still have a 50% chance for each embryo.

So... in the short term this doesn't affect anything regarding our three planned retrievals. But... once we figure out how many CGH normal embryos we have, we're going to have some difficult decisions about what to do with them.

The safest path would be to use a gestational carrier (who is screened to make sure she doesn't have a partial DQ Alpha match with my husband). That would give each CGH normal embryo the 72% live birth rate chance that Dr. expects.

But... I really want to be pregnant. But... the idea of another miscarriage is daunting.

I don't know yet what the chance of success with a matched embryo is - it's not 0%, but it's low. And I don't know how quickly we'd know that it's a problem embryo. (He only transfers one embryo at a time in cases of a DQ Alpha match, so that a problem embryo doesn't lead to miscarrying a normal embryo as well.)

Since I don't expect to have very many CGH normal embryos, I'm not sure I can risk them in my body.

Which is devastating.

I really didn't expect this - our two miscarriages were missed miscarriages, with chromosomal issues. And my pregnancies, short-lived though they were, were easy.

It makes me very sad. And I feel (again) betrayed by my body.

We could choose to use a gestational carrier for our embryos, since we're likely to have only a few. Or maybe use a GC for the first one, and then risk the others in my body. Or use GC for our embryos, and risk donor egg embryos in my body since we're likely to have many more to work with. It's a whole set of options I didn't think I had to face, and it's deeply upsetting to have that all turned upside down.

All that said, I'm glad to know. I would much rather make an informed decision, weighing the risks, than to transfer CGH normal embryos in my body and wonder why they either a) don't take, or b) keeping miscarrying.

If you're feeling supportive tonight, please also visit Augusta who got some devastating news today.


  1. oh gosh, what news. im so so sorry. i can imagine you must be devastated. one thing i know is that you will find a way to move forward with this information (in one of many possible ways) and become a mama. i am sending you lots of love and hope for the future.

  2. Wow! He thought that's what we would have, but didn't. Very interesting. Knowledge is power, but it's never good news to find out something is wrong. Hugs.

  3. wow, this was an educational read, and i went to the link too bc it's fascinating (altho in an UGH kind of way). i'm sooo sorry you're dealing with this yet glad that it was discovered so that you can make any future decisions with eyes wide open. i completely understand the *wanting* to experience pregnancy part. who wouldn't. i hope the answers come easily, although that's just wishful thinking on your behalf. this stuff isn't easy and you've had to endure more than is fair. ugh. sending you big big hugs. there's an answer and a path to mommyhood in all this. *hugs*.

  4. Hey my friend! I totally understand the issue you have to go through.. Did I tell you about my friend who had done 5 IVF and had BFN & miscarriage. After all that IVF, she was told that she and her BF share the same gene and every time they did IVF, NK cell was activated at higher and higher level. Dr Sher found that out. I agree with you. It's good to have knowledge of what's really going on, so you have options as to what you want to do. Hey, you still have hope though! We IFers only can go for that miracle to happen!! HUGS !

  5. Oh wow - what interesting news, but very hard to hear, I'm sure. The good news is you now know what you're dealing with. But there are some tough decisions to be made. I completely understand the feeling of wanting to experience being pregnant - that would be hard to give up. But it's one small part of the whole thing I guess. You'll figure this stuff out, I'm sure. Hugs!!!

  6. The decision to use DE and/or a GC is highly personal and not easy. For me, in was ready to move on to a carrier to escape the fear of another m/c. It was devastating as we were also using DE so it would cut me out of the equation completely. but you are different. Either you use DE and your ute' or a GC with your embryo. If i had to choose I probably would go with my eggs and the carrier but that's just me.

    So sorry you are going through this.

  7. I'm so sorry to hear this news. Despite how hard all this must be to hear, at least it gives you some information to work with. You will be a mama one way or another. Thinking of you and sending hugs. xxx

  8. This type of news is so hard to process. It goes against everything you have dreamed and hoped for. At the same time, you have REASON things haven't been working and with this information you can choose a pth that will work. Take care of your heart during this difficult time. (This is Runningmama from More Room in My Heart. Can't comment through google for some reason)

  9. This is heavy news to process. I am so sorry you have to face all of this and make a decision. I am impressed with your response to see it as information to prevent additional miscarriages, but the cost is so great.

    I hope you can experience pregnancy as well. I hope that very much for you. My hopes are equally as high and higher for your baby to make his or her way to you, no matter what the path.

    I hope you are doing well on your end. This is such a heavy load.

  10. My head is just spinning for you! All this immunological stuff is so incredibly interesting. I know you will make the best decision for you with regard to DE/Surrogacy or your own eggs in time. Just trust that every day is one day closer to that decision. This is the worst part...

  11. Wow, what a lot to process. Sorry you are having to deal with more things injected into the equation...that's tough. Hugs to you.

  12. I just got my consult with Sher and found out I too have NKa and a partial match. Googled it and your blog popped up first. Now I have to read your blog to see what happened with you... we're about to start our first cycle for staggered IVF too. I hope you got good news. *hug*