After our miscarriage this summer, my RE suggested that I do the battery of blood tests for recurrent pregnancy loss to dig deeper into what might be going on. My first pregnancy in 2008 ended at 21 weeks gestation and this one at 7.5 weeks. We gave birth to our rainbow baby in July 2010. All pregnancies have been the result of fertility treatments, as we have struggled with infertility over the course of 5 years.
After our stillbirth in 2008, we wanted to make sure we were tested for everything under the sun that could have possibly caused a later trimester loss. Everything came back normal at the time and the loss of our son was considered a fluke. The biopsy of the baby that we lost this summer did not yield results.
Evidently the bloodwork for RPL is a broader battery of tests than I had done a few years back following our stillbirth. I now finally have learned that I have a single MTHFR gene mutation as well as low Protein S. I have been prescribed Folgard for MTHFR. My Protein S level has been tested twice over the past few months, and although it is below the normal range- the hematologist who reviewed my paperwork has deemed that I do not have the disorder and therefore would not be prescribed lovenox in a future pregnancy.
Even though the doctors could not give a definite reason for our stillbirth, blood clotting was a strong possibility and in my gut have felt it was the reason. So I guess this news of potential immune issues doesn't shock me- I just wish I knew more about it and wish I knew sooner. With our rainbow baby, I took baby aspirin throughout the pregnancy. However, it was treated more as "it can't hurt" than an actual preventative measure by my doctors. I was told not to bother taking it during this last pregnancy, which was short-lived.
I've just moved to a new state and need to start over with doctors (ugh!). In addition to meeting with a new RE soon I also would like to talk to a hematologist in person about the low Protein S and treatment thereof.
This is new information for me. If anyone out there can offer suggestions, share experiences related to MTHFR and/or low Protein S/Protein S Deficiency as it relates to infertility and baby loss, I would appreciate hearing from you.
I have two copies of MTHFR and am borderline Protein S deficient (depending on when I am tested as my levels fluctuate). I did lovenox and baby aspiring and Folgard, which I attribute to the only reason I stayed pregnant the two of the 5 pregnancies I've had. If you're interested, check my archives April/May 2007.
ReplyDeleteMany hugs.
Thank you for sharing this info, Stacie! I will read those archives. Thanks again.
DeleteStacie, for some reason I can only see back to November 2007. Thank you for letting me know what medications you took that resulted in your success. If there is any other info from April/May 07 that would be helpful please let me know.
DeleteI enjoyed searching around on your blog bc/ I got to see lots of great pics of the boys! :)
Aw, thank you about the boys. I think they're pretty awesome, but I may be partial. :)
DeleteTry the other blog, Life As I Know It. You should be able to find it through my profile. I wrote about all of my conception stuff there.
Hm. It isn't listed. Interesting. Well here it is http://www.stacieslife.com
DeleteThank you! I've read the archives. Sounds like I have a somewhat similar "diagnosis." My RE said no on the lovenox, but since I moved and will be going to a new RE it will be interesting to find out their opinion. My feeling is why not do it if it doesn't hurt? (Of course I will need to get pregnant first!!)
DeleteIt was cool reading your early entries how you hoped for twins (or more!) and that you eventually got your wishes- despite the long journey. Those early days in the NICU must have been hard.
Thanks again for your support!!
Thank you for your comment. I am sorry you have had such a hard journey. I am based in the UK, not sure where you are. To find a voluntary adoption agency (charity) in the UK the best webssite is http://www.cvaa.org.uk/adopters/vaasearch.php. The other options are your local councils. Let me know if you want more info. I am at the very beginnings of adoption
DeleteHi, thank you for the info. I am in the US. Good luck moving forward- I will be following.
Deletei don't know these two conditions in detail, but i would recommend you talk to a recurrent miscarriage specialist if there is one in your area. i've been on lovenox this entire pregnancy despite most mainstream tests showing no issues (and extended antiphospholipid syndrome panel DID turn up some issues, however, but is not considered important by my mainstream docs).
ReplyDeletei hope you can get some good answers.
the "kitchen sink" approach is what finally worked for us, but i guess we'll never know if it was needed or not. i figure who cares if we can just get out the other side!
good luck to you!
Mo
Thank you, Mo, for your advice! I didn't even know that type of specialty existed and will look for one asap. I know you have done a ton of research and you have been through it all- I really appreciate your suggestion.
DeleteI agree, why not take precautions that are safe!
Hi, I just stumbled on your blog and I thought I would chime in!
ReplyDeleteI would second the specialist suggestion. My RE was not specifically listed as a RPL specialist, but he was highly recommended for his work with RPL patients. All of my bloodwork came back negative, but he still suspects a clotting disorder (apparently sometimes they don't show up on the blood panel) so he put me on Lovenox in conjunction with baby asprin last pregnancy. Unfortunately, that pregnancy still ended in a miscarriage but I feel better knowing that at least we tried the Lovenox. If I manage to get pregnant again I will still be put back on it just in case. It's all a matter of better safe than sorry with my RE and I prefer that approach.
Hoping this new doctor can help you get that take home baby!
Thank you for your comment- I appreciate it! I am hoping my new RE will have the better safe than sorry outlook about Lovenox. Of course then I still have to get pregnant! :)
ReplyDeleteIf they found MTHFR and have you on folgar, that is hopeful. I am speaking from my friend's experience, not my own. She had 5 losses and they never tested her for this(idiots) and was on adoption list when a new OB made her start taking folgar. Her son was born 10 months later. Even with the super extra folic acid he had minor spina bifida, but immediate surgery corrected it and he is a wonderful almost 3 year old. Good luck!!!
ReplyDeleteThanks for your noted of encouragement! Glad your friend finally had success. I agree- idiots for not testing sooner. Do her doctors or her know if the spina bifida was a result of MTHFR?
Delete