My story: started TTC at age 35. Got pg at 36,38, and 41 (all were natural conceptions) only to lose the pgs after 2 good u/s with h/b. After the third loss (age 41) decided to move on to DE IVF.
My THERAPIST (whose help I sought to deal with the grief of pg loss) referred me to a reproductive immunologist who recommended a long list of expensive tests not covered by insurance. Took that list to my RE (in whose care I'd lost the last 2 pgs) and asked, "What, if anything, on this list has merit?" He said, "APA and NK Count." (Why I had to bring him that list before he thought to recommend the tests I'll never know...) Was tested and came up positive for APA with elevated NK. He said, "If you conceive again I recommend injecting Lovenox, a blood thinner, daily for the duration of your pregnancy. To treat NK Count I recommend taking low dose prednisone, a steroid, orally during the first trimester." (NOTE: HE DID NOT SAY: I DON'T RECOMMEND YOU TRY TO CARRY A PREGNANCY.")
Went on b/c pills while I committed to finding an egg donor:
First DE cycle canceled prior to retrieval due to problems with donor's health history that didn't come up before then. Moved to a new RE whom I hoped would be more on top of things. (Could not get a call back from first RE once donor's grandmother's health issue came up. Needed to know: should we cancel or not? He would not call us back til I threatened his office with us canceling then and there.)
2nd cycle canceled at advice of our new RE,prior to retrieval due to donor not stimming well enough. (he didn't like the number or size of the follicles by D4 of stims.)
3rd attempt at Donor cycle, same RE: ESET blast transfer took and I got a positive beta! Injected lovenox daily...However, had to go off of the Lovenox (per my OB's instructions)one week before the scheduled c-section (necessary due to fibroid blocking my cervix) and 2 days later I came down with the worst class of HELLP Syndrome that ruptured my liver, gave me a stroke, put me in a coma...required brain surgery, tracheotomy and 6 months in hospitals, 18 months of cognitive and physical therapies. I'm told I'll probably never regain any of these lost memories back since the brain damage was so severe the memories never made it into long term storage and thus are irretrievable.
Sad about all this but grateful to be alive and have gotten all this amazing care (covered by our dual union provided health benefits.)
We have frozen embryos left and while I know it is too dangerous for me to ever consider carrying another baby, I was wondering if it is possible/safe for a surrogate to carry one of our frosties. A reproductive immunologist whom I emailed said, "A healthy surrogate should have no problem." but a researcher into HELLP (at USC) said, "A surrogate is at increased risk."
The implication is that HELLP is caused by something that comes from the embryo itself, although at this point, they are just speculating.
Does anyone on this board know anything about this topic? Or can they point me in the right direction to learn more?
Sorry for the long post. Thanks ahead of time for any input.
I know your story well, and was lucky chat with you once on the phone. I have a friend who is an amazing genetic Counselor, don't know if this would help but if you are interested let me know and I will email you her contact information. I would look into this thouroughly as I think you just might be able to have a GS no problem. I am excited for you if this could be so.
I have been getting conflicting feedback on the potential of a gestational surrogate to get HELLP. Dr. Braverman, the RI, said there is no increased risk but Melissa Wilson who heads the research on HELLP Syndrome at USC says there IS increased risk...and that new research points to a maternal AND paternal component so that possibly some factor from my husband and something from me and from the embryo itself caused my illness. As you can imagine this makes me feel very odd. I have always considered myself very blessed in choosing this amazing man as my husband...
Then I try to think of it as: what if he'd turned out to be a carrier for muscular dystrophy or cystic fibrosis? Would that be his fault? Would I love him any less?
The answer, of course, is ,"No."
I am sad that I can't have another child but have decided to focus on raising the one I do have as best I can.. at the same time I try to get a life I loved and my health back. I also realize that the grief about not having another is grief over missing out on my DD's first six months and even having another baby wouldn't bring that back.
I can only imagine how you feel but you really explained how you feel so well, and why you want to have a second. How strange it is that they believe it could be a varying of components that lead to HELLP syndrome.
Keep me posted on how it is going you are such and awesome brave woman who is doing so great!