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. Sh.er 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. Sh.er 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. Sh.er'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. Sh.er 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.