37 weeks. That is how long I have stayed pregnant. He’s finally almost here. I still thank Jehovah everyday for this miracle.
When we were ready to start this journey for one last time I was terrified. I still had to try just one last time. I couldn’t live with myself knowing that we didn’t try once more. After all that I had learned through all of this there was still a chance in my mind that we can make this work.
So first, I will share what I have learned about my multiple miscarriages. Here’s the nerd break down. To be clear my research consisted of a lot of wikipedia and youtube besides speaking with doctors and other women going through the same thing. I take everything I learn from the internet with a grain of salt but here is where my journey led me.
My first pregnancy was a success. Our son is now almost 7. However when we tried for number two that one ended between 12.5 and 13 weeks. We saw on target growth and movement and a heartbeat and one day the heart just stopped. My doctor assured me that one miscarriage is common and chances are in my favor of another successful pregnancy and the most typical cause is a chromosome abnormality. We opted not to genetically test the fetus because it was more than likely just a badly formed chromosome. I now feel very differently about that assumption. In a rush to have a “do over” I was eager to get pregnant again. I needed to fill that empty feeling quickly. The next pregnancy ended with me bleeding by 7 weeks. My body was in high gear to quickly end that pregnancy. Again my doctor told me that still chances are in my favor of having another successful pregnancy. I tried to seek answers online and seemed to get the same response on the seemingly low statistics of having multiple miscarriages. I convinced myself that the third time will be the charm and there is no possible way this could really happen again. Once again we saw a heartbeat and normal growth and by 9 weeks the heart stopped. I needed answers. The “standard” to begin testing for answer is after 3 losses!!! I should have demanded answers sooner. That’s too many!! By “standard” I mean what is recommended by the American Congress of Obstetricians and Gynecologists the ACOG. http://www.acog.org/~/media/For%20Patients/faq100.pdf?dmc=1&ts=20131205T1614054291
According to the ACOG the cause of miscarriage is a chromosome abnormality and everything else is just “unexplained.” I could not sit with “unexplained” as the diagnosis.
My doctor agreed to start testing for the “standard” causes including Thyroid, Lupus and so on. The initial panel ordered by my OB found only one copy of the MTHFR gene and an inconsequential antiphospholipid anti body. (for the very nerdy I’ll explain what those are) According to the “standard” these things don’t point to a cause. Since that answer was not good enough for me I started digging. My search lead me to a book called “Is Your Body Baby Friendly?” by Dr. Alan E. Beer. The title intrigued me and it was like nothing else I found.
This book was written by a doctor who did decades of research on the subject and finally broke it all down into a book for the rest of us to understand. It takes a much deeper and broader approach to diagnosing and treating the “unexplained” pregnancy loss. I inhaled that book and completely identified with everything it said. That was just the starting point for me to getting answers. Of course I mentioned the book to my OB and realized this stuff is considered “reaching” and a waste of time and money. Since I still couldn’t accept “unexplained” as my diagnosis I “reached”.
The back of the book had some great resources including a handful of favorable doctors in this field as well as an online group of those with similar experiences. It is a Yahoo Group called Reproductive Immunology Support. That online group has been the anchor for me. These women speak like doctors because they have also had to be their own advocate and demand answers. I finally found others like me.
Here’s what I have learned. It gets nerdy from here on. You can skip to the end and just buy the book or try to stay with me. As much as 80% of “unexplained” pregnancy losses are the result of immune problems and chances of loss increase with every subsequent pregnancy. In fact one Canadian study reported that risk of a first miscarriage is about 11-13% and in pregnancy immediately following a subsequent loss it goes up to 13-17% but a chances of a third loss goes up to 38% and higher with each loss. (information taken from Is Your Body Baby Friendly) Quite opposite of what I was told by my OB. The reality is, recurrent loss is not the result of chromosome abnormalities but the body fighting the wrong fight. There are in fact several factors that can attribute to recurrent loss and it requires a thorough investigation to be sure that each factor is addressed.
So I sought out a Reproductive Immunologist or RI local to me. This is different from a Reproductive Endocrinologist or RE who specialize in fertility treatments. They can also miss the whole picture and many can still suffer from recurrent loss with even good quality embryos. Now there are truly only a handful of doctors who do this across the country and many treat patients from a distance because they are so few. Also, each doctor has their own approach and don’t always agree on the details of diagnosis and treatment. Each doctor seems to pioneer their own research and treatment so you have do your homework too. I had a very large and very expensive panel of blood work done (husband too) to see if we could get a whole picture.
Here is what we discovered in my case.
APA or Antiphospholipid Antibodies
According to the RCOG (the British counterpart to the ACOG) “Only two antiphospholipid antibodies, namely lupus anticoagulant and anticardiolipin antibodies have been found to be of any clinical significance and testing for any others is not useful.” However there are 18 other antiphospholipids that can also be attributed to recurrent loss but really only the anticardiolipin and lupus anticoagulant is typically used. Here is the tricky thing. This antibody can come and go. So really a diagnosis needs to be done with blood work spread apart by a month or so to get a true diagnosis. So what is APA? For one, it can be attributed to blood clotting. Here is one wiki answer http://en.wikipedia.org/wiki/Antiphospholipid_syndrome and here is a much more in-depth explanation http://circ.ahajournals.org/content/112/3/e39.full.
We actually found two factors for APA and anticardiolipin was one that did show up on another test which was good enough for my OB thank goodness!
APA can also be attributed to preeclampsia as well.
I have been injecting Lovenox everyday since the beginning of my cycle and have now switched to Heparin nearing the delivery.
Elevated NK’s or Natural Killer Cells
We all have these cells in our body. They are like the giant bouncer at the door ready to smack down anything that doesn’t look right. In fact we need these cells to break down pre cancerous cells. But when these are triggered they can create an autoimmune response. These are a specific white blood cell which in normal pregnancy actually are meant to suppress so it doesn’t view the embryo as foreigner invader. This turns out to be a common factor in recurrent loss and the solution is to suppress this immune response. There are two methods RI’s employ for this diagnosis. One is very very expensive and the other is way more accessible and now viewed as just as effective. The first is an IV solution of Immunoglobulin or IVIg. This is blood fraction consisting of antibodies extracted from the blood plasma. Here’s a pretty good explanation of that. http://primaryimmune.org/idf-plasma-center-partners-program/immunoglobulin-therapy/. I’ve heard of this therapy running between $3,000 and $5,000 per infusion and in many cases it will not get covered by insurance. The other option is an IV solution of Intralipids. What is this magic solution? It’s really just a fat. Here’s the wiki answer http://en.wikipedia.org/wiki/Intralipid. It’s so fascinating to me to learn about the role that fats have in the process of inflammation in our bodies. An immune response is really inflammation in the body and chronic inflammation can lead to disease including obesity, heart disease even cancer. So this very simple solution of soy bean oil and egg phospholipids actually supplies the right amount of essential fatty acids to calm down the immune response. This therapy runs about $400 to $600 per infusion and sometimes it can get covered by insurance.
And for a more in-depth nerd explanation I found these awesome Khan University videos that help explain the role of the immune system. http://www.youtube.com/user/khanacademy/search?query=immune
I did three rounds of Intralipids during the first trimester.
MTHFR or Methylene Tetra Hydro Folate Reductase
This is a gene mutation that is inherited from either or both sides of our parents. If you carry one copy your are heterozygous and if you have two copies then you are homozygous. This gene is responsible for converting homocysteine in the blood to methionine. It has also been linked to heart disease, blood clotting, as well as miscarriage. The most important factor to this process is Folate and also essential to fetal development. Those with this mutation do not necessarily absorb or process folic acid or folate. So in order to combat this the treatment is actually very high doses of vitamin B especially folate as well as low dose asprin. I found a very good blog post that breaks down MTHFR if you want to get more details. http://lifebalanceinfertilitycoach.wordpress.com/2008/10/07/the-mthfr-tutorial-genetic-mutation-and-cause-of-miscarriage/
Group B Strep
I asked my doctor to go out on a limb on this one. It turns out that Group B strep can actually be a normal bacteria and may not cause any symptoms. In fact this is a routine test for all pregnant mothers nearing their delivery and is treated with IV antibiotics just before delivery so it does not pass to the baby in the birth canal. However it is not normally attributed to miscarriage. There is a doctor sort of pioneering the idea that the presence of group b among recurrent miscarriages is a cause. I brought it up to my doctor and in fact I was a carrier and she agreed it was safe enough to give me antibiotics which I took just prior to conception. http://www.fertilitysolution.com/Latest-Research/Miscarriages-Associated-with-Group-B-Strep.html
Whether that was the a big contributing factor for me I can’t be totally sure but it really didn’t hurt to just take the antibiotics.
So that is my nerd post. I wanted to share all this fascinating stuff I’ve learned and hope it will help others seek out answers for themselves and not to give up when there is still a chance. I hope to share the rest of my story very soon 🙂