stepping stones

The plot is thickening in the B family household.

(that’s us, just to be clear)

So much so that I have no choice other than to follow the compulsion to write it down.  My hope is that I can serve a twofold purpose: 1) to keep friends and family (and anyone else who’s interested) informed of our situation, and 2) to put my story out there in case it can help another person get to the place they need to be.

It gets really confusing nowadays when I try to explain my situation to someone.  I start talking about genetics and fertility specialists and I see their eyes begin to glaze over.  That’s when I know I’ve left them somewhere below the stratosphere and I am talking waaaay over their head.  Heck, I’m mostly talking over my own head.

It’s hard to even know where to start, but the background is this: I’ve been married to my wonderful hubbie for 8 years, and in the past 6 years, we have had 5 miscarriages and 2 children.  We have a 5-year-old boy and a 2.5-year-old girl.  Two of my miscarriages were pretty late, at 16 weeks.  The others have been earlier (8 weeks, 5.5 weeks and 10 weeks).  I’ve had 3 miscarriages in a row since my daughter was born, which now puts me in the category of having “recurrent miscarriage” – a problem that only about 1% of women have (so they say).  After my third miscarriage, which occurred last summer, I went to two different fertility specialists in the Pittsburgh area.  Neither of them found anything “wrong” – which is good in the sense that it ruled things out, but bad in the sense that I can’t be treated or helped.

I wrote extensively about the spiritual side of last summer’s 16-week miscarriage, as well as my severe problems with postpartum depression/anxiety, on this blog.  You can check out the archives in June, July and August of 2011, if you’re so inclined.  This year, I want to talk about my utter frustration with doctors and what I have found in the way of help.  God’s faithfulness is apparent in both aspects!

The first specialist I saw was a doctor at the Western Pennsylvania Hospital in Pittsburgh.  His specialty was in Maternal-Fetal Medicine and High Risk Obstetrics.  He was very thorough and kind, and did a really nice job pretending he didn’t hear my then-4-year-old son when he blurted out “He looks weird.”  He tested me for a few factors that can affect pregnancy outcomes — to get boring and scientific on you, the tests were: 1) random glucose, HgbA1c (hemoglobin something or other), platelets, anticardiolipin antibodies, and lupus anticoagulant.  All I know is that these are tests for metabolic and clotting/autoimmune factors, and they were all normal.

The doctor explained that many pregnancies fail due to “random chromosomal errors.”  In fact, about 2/3rds of first trimester miscarriages are due to these sorts of errors.  So essentially, I was just unlucky, having lost three pregnancies in the first trimester at that point.  (Even though 2 of them were discovered at 16 weeks’ gestation, both of those babies measured around 13 weeks, which is still in the first trimester.)  The solution?  Keep trying.  Doc said I still had a pretty good chance of carrying to term – maybe only about 5-10% less likely to carry to term than the average woman.

That was in July 2011.  In December 2011, after talking to a friend, I decided to give Reproductive Health Specialists in Pittsburgh a call.  I was able to get in quickly and met with a very nice woman doctor who spent about an hour with me.  She knew the doctor I had seen first and said he did a very thorough work-up.  She did not wish to order any further testing, except for a sonogram to examine the anatomy of my uterus.

Uterus is such a funny word.  Go ahead and say it a few times.  Right?

Anywho, my uterus was fine, which ruled out anatomical abnormalities that could have contributed to pregnancy loss, such as the presence of a septum or other abnormality that could interfere physically with the development of a baby.  So that’s good, too.

This doctor’s recommendation was the same as the first doctor’s: keep trying.  Take your prenatals and keep trying, and chances are you will carry to term again.

Oh by the way, “Good luck!”  And, “Sorry about your luck!” … “It’s just so unfortunate that you’ve lost two babies at a really rare stage in the game and one baby before that, but keep trying!”  … Ha…  I suppose that little outburst makes me sound bitter, but I’m really not… I’m just poking fun at the very unfortunate nature of the situation, and cracking inappropriate jokes sorta makes me feel better!  In all seriousness, the doctor was very understanding and very nice, and reassured me that I am not alone.  She said that about 50% of women like me simply do not get answers.  She also spent some time talking about genetic codes and how very little we (as humans) know about them.  She mentioned that there is much about our knowledge of the reproductive process that is still “crude.”  Imagine that – humans don’t know everything!

So after I saw her in December, I miscarried again in February.  It was a very early one, and for that I was grateful.  (You don’t have much time to get attached to the idea, and recovery is non-surgical.)  I called her office back and told them what happened.  After consulting with the doctor, they called me back and told me her recommendation was the same.  Keep trying.

Here’s where I really start to see the Lord laying out all those stepping stones for me.  Yea, it’s not easy, and I can’t tell you why things have to take so long, but I just try to focus on His faithfulness to me in a very broken world.  But the next step for me was to go to an integrative medicine facility, Medical Wellness Associates in Jeannette, PA, where I met with a doctor who ordered several more tests for me.  I wrote about the findings here.

One thing that doctor found was the MTHFR gene mutation.  MTHFR is a genetic mutation that about 30% of the population has.  It stands for “methylenetetrahydrofolate reductase.”  Whatever.  All I know is that it affects the way we metabolize certain vitamins like folic acid and B12.  So my new doc put me on special forms of both of those.  It made sense that maybe I was losing babies because they weren’t getting the proper nutrients and maybe they had neural tube defects from lack of folic acid.  No one can say for sure, of course, but it’s certainly better to be on the forms of the vitamins I can absorb, rather than not be getting enough of them.

So all was well and good until I miscarried again in July.  I was 10 weeks along.

Here, too, the Lord provided a great mercy for me.  1) I already knew about having MTHFR; 2) I had begun doing some writing about my experiences and had ordered a book for research purposes; 3) the book came just a few days before I miscarried, so I had it at home while I was recovering.  The book is called Avoiding Miscarriage by Susan Rousselot.  Devastated by yet another inexplicable loss, and having my nerves fried from the trauma of it once again, I set to reading this book and quickly found inspiration to keep looking for answers.  It truly was a Godsend.

The long and the short of where I stand now is as such: I became convinced that I needed to find a reproductive immunologist.  I started by making several phone calls to the specialists I saw before, but this field is newer and most specialists fall in the category of endocrinology.  (Some endocrinologists do take a more progressive approach to immunological causes, but the ones I saw did not.)  I even went back to Reproductive Health Specialists, but was not encouraged.  If anything, I knew I’d gotten my answer about which doctor was not going to help me.

My sister-in-law also has MTHFR and was very supportive, telling me that she was treated for it, and she feels very confident I can have more children.  Talking to her was another kindness from the Lord, particularly because the doctor at RHS had so discouraged me.  But all was not lost and I got back in the saddle!

For the sake of space, I am summing things up tremendously, but I wanted to get this all down before I make my very exciting next step.  This week, I am traveling to New York City to see a reproductive immunologist, Dr. Jeffrey Braverman.  He is only one of a handful of reproductive immunologists in the country – and maybe the world, for that matter!

I did a preliminary phone consult with him today to make sure he thought he could help me, and he told me he felt confident he could.  He was reassuring, telling me that he sees women like me many times a day, and he will figure out what’s going on.  Looking at my history, he said he felt sure there is something immunologic going on, and not to worry – come to New York, and he will do all the figuring out.  This was the first time I’d ever heard anything like that.  For the first time, I’m starting to feel like I can relax a little and let someone else finally do the work for me!  Hopefully, this will mean no more pedaling without getting any answers.  No more hamster wheel.  Hopefully :)

This morning, I prayed to the Lord that He would guide me, and maybe even “this week” that He would bring me to the right doctor.  Once again, I am thanking Him!  (And am really looking forward to taking my son to the biggest toy store in the world :)  )  I will definitely try to keep posting.  I just know I am not the only one out there frustrated with the current lack of answers for recurrent pregnancy loss.  Here’s hoping this momma can help another momma out.

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About Sara

I am a 30-something momma of two with a history of recurrent pregnancy loss. After receiving no answers from "regular" fertility specialists, I discovered that there is a pioneering field of fertility testing and treatment called Reproductive Immunology. The American College of OB-GYN's still does not recognize this field, but I felt strongly that women needed to know there might still be answers for them. I started a website to inform and encourage others to be their own advocates.
This entry was posted in miscarriage, pregnancy, suffering. Bookmark the permalink.

One Response to stepping stones

  1. Pingback: why “reproductive immunology”? | her bigger lens

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