Resources After Loss

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So, about four weeks ago I promised that I would post some more thoughts about my miscarriage experiences along with some resources. Whoops. I don’t really know what happened. Life I guess. And, I honestly think that writing about my miscarriages was so cathartic and cleansing, that I just didn’t want to think about it anymore. I had gotten it out — my emotions, my feelings — I laid it all out there and it felt so good to move on, that I think subconsciously I didn’t really want to revisit the sadness again.

But in case this information is useful to you, here are a few more details.

First of all, and this is a big one, I NEVER KNEW that a woman could have chromosomal testing done on a miscarried baby. I never, ever, ever knew that. My original doctor NEVER mentioned it. And honestly, I can see why he wouldn’t mention it after the first miscarriage which was a considered a chemical pregnancy (just like my last one), because I couldn’t even have had any testing done at that point. And, for miscarriages before six weeks gestation, 70 percent are believed to be caused by chromosomal abnormalities.

But my second miscarriage, a baby who’s heartbeat we saw at six weeks and I didn’t miscarry until eight weeks? He never even mentioned it. Research varies, but typically if a heartbeat is detected on an ultrasound at six weeks gestation, the risk of miscarriage drops to 5-10 percent.

Instead, the only thing we discussed was my options for getting the baby out (it’s horrible to even remember; I’m cringing) — a D&C (basically surgery) or a pill that causes the uterus to contract and things happen naturally. At the time, I just really, really, really did not want to go to the hospital and leave without a baby. And, he encouraged the pill. So I did that and it happened at home. But here’s the deal — you can’t even do chromosomal testing unless you do a D&C because otherwise you’re basically losing what you would test at home. Testing never even came up in our conversation.

Second of all, my original doctor continually dismissed my concerns and fears. This is a red flag. At the time, while it made me uncomfortable that he just kept offering the same “It’s just bad luck,” “Relax,” and “Just keep trying,” (GAG) speeches, I didn’t know what to do about it. And, I trusted him, so I ignored the voice in my head that said, “Something does not seem right.” I didn’t know what else could be done for me, but it sincerely bothered me that my doctor didn’t seem to be taking it seriously.

After the first two losses, I had my successful (and very normal) pregnancy with Monkey, with my original doctor. I thought my losses were behind me.

Then in November 2008 (when Monkey was only nine months old) we had a happy accident and I discovered I was pregnant. When I went in for my six-week ultrasound, we couldn’t find the heartbeat. My doctor tried to reassure me that since the baby was measuring a little small that “I’m sure your dates are just a little off and it’s too soon to find a heartbeat.” My ass. I KNEW there was no way my dates were off. Sorry, I’m just not the girl whose dates are off.  It’s the Type A in me. We scheduled an ultrasound for one week later. Again, no heartbeat, but there had been some growth. The doctor wasn’t ready to officially declare the pregnancy over — and I guess I don’t blame him because you don’t want to jump the gun on that sort of thing — but not finding the heartbeat when I was 7+ weeks pregnant? Game over. I had to wait yet one more week and one more ultrasound with no heartbeat and no growth this time, before we knew it officially was over.

Again he presented me with my options — D&C or pill. Again, he NEVER mentioned chromosomal testing, at which point I was having my THIRD LOSS. My SECOND loss past six weeks. And he even had the GALL to tell me AGAIN “You’re not at an increased chance of miscarriage until you’ve had three losses IN A ROW. And since you had a successful pregnancy in between your losses, you have the same chance of miscarriage as everyone else.” I was just in disbelief. Seriously buddy?

Since I had accidentally gotten pregnant that November, we waited until Monkey was a year old in April 2009 before trying again. That May I got pregnant with Bean.

Given my history, you would think that my doctor would want to see me sooner rather than later, right? Nope. When I called to make my appointment, my doctor’s schedule was full and he couldn’t see me until I would have already been close to 8 weeks pregnant, and forget about a six-week ultrasound to see the heartbeat. I just kept thinking to myself, “I probably won’t even be pregnant anymore by eight weeks!”

That was it! I was furious. I checked around with some friends, chose a doctor several of them said they liked, called that doctor’s office, spoke to his nurse, explained my history, and by the time I hung up the phone, the lab was expecting me for hormone testing.

Hormone testing? This was a completely new experience for me.

This new doctor was taking my history TOTALLY SERIOUSLY. In fact, his nurse told me that three miscarriages, whether they’re in a row or not, made me a “habitual aborter” (cue sucker punch to the gut). It didn’t exactly make me happy to hear her say that, but I knew that this practice was going to be taking a totally different approach.

At my first appointment with the new doctor we discussed my history and whether I had ever done any testing. He explained that since I was already pregnant, we couldn’t do any of the tests, but he did encourage me to do them afterward.

Not only did my original doctor discourage me from doing a full work up, but he didn’t even offer to do the hormone checks in early pregnancy to check to see if my levels were rising appropriately. It was through this hormone testing that my new doctor discovered that my progesterone level was initially good (28), but then dropped (26), which it’s not supposed to do. My new doctor proactively put me on Prometrium, a synthetic progesterone.

I can’t help but wonder if my second pregnancy when we initially found the heartbeat, but then I ended up miscarrying two weeks later, would have gone to term had I been on Prometrium.

Darci Klein, author of To Full Term, the book I referenced in my last post, includes a section entitled “What Every Woman Should Know.” I highly recommend reading the entire book, but this section in particular has actionable steps that women can take if they’re experienced recurrent loss, or even one loss later than the first trimester.

She emphatically recommends getting a detailed workup. Again, something that my original doctor would dismiss by saying, “Typically, we never turn anything up.” Well, statistics actually show that a detailed workup finds the cause of recurrent miscarriage 50% of the time. Fifty percent is a lot! If HALF of the people who have experienced recurrent losses could find out, wouldn’t that be worth it?

After Bean was born, these are tests I did at my doctor’s recommendation. It was a simple blood test:

  • Lupus anticoagulant screen
  • Factor V, Leiden
  • MTHFR DNA Mutation
  • Clot inhib protein S, Free
  • Clot Inhib protein C, Acttiv
  • TSH

I honestly don’t know what they all mean, but based on the tests listed in Klein’s book, this seems like a pretty comprehensive list. The tests turned up nothing unusual.

Here are some other resources I’ve found helpful:

http://www.tofullterm.com/whyloss.htm

http://www.americanpregnancy.org/pregnancycomplications/miscarriage.html

http://www.americanpregnancy.org/pregnancycomplications/earlyfetaldevelopment.htm

http://www.americanpregnancy.org/duringpregnancy/hcglevels.html

During the summer of 2011 I switched to a midwife in my doctor’s practice (not because I was looking for a “better” doctor, but because I heard rave reviews about this midwife’s bedside manner). So far, I’m super pleased with her, and she too, is taking my losses very seriously.

After this last miscarriage my midwife offered up a couple of other tests that we could try, including a homocysteine lab. An elevated level could indicate that I have a problem with clotting.

And, doing an enodmetrial biopsy on day 21 of my cycle. The biopsy can help determine if I have a luteal phase defect. The luteal phase is the second half of a woman’s menstrual cycle and my non-professional understanding is that if my body is not producing enough progesterone during the luteal phase then the lining of the uterus will not thicken enough to allow a fertilized egg to properly implant (basically getting my period too soon). This could be a legitimate problem for me since I seem to already have progesterone issues. The only drawback to this biopsy is that the luteal phase may be fine during one cycle and not fine during another. It’s kind of a crap shoot. For now, my midwife has me taking Prometrium from the day I ovulate until I get my period, which is what she would recommend if a luteal phase defect was found anyway. Eventually I think I’ll do the biopsy though.

What I do and don’t know

What I do know is that according to the U.S. National and Vital Statistics Report, one million clinically diagnosed pregnancies (those that grew for a minimum of six weeks) are lost every year in the U.S. As Klein says, “According to official statistics, both literally and figuratively, babies lost before six weeks gestation simply do not count.” When miscarriage estimates include preclinical losses, the estimate skyrockets to between 2.3 million and 5.4 million — 30 to 50 percent of all pregnancies in the U.S., and affecting two of every four women.

What I do know now, is that guidelines for testing are antiquated and based on old research, and that miscarriage is an underfunded medical problem. Your chances of finding a doctor who takes your concerns seriously is probably luck. Some do, some don’t.

What I do know now is not to ignore the voice in my head. Even if you don’t know what else could be done for you, find a different doctor. Get recommendations from your friends or schedule free “get acquainted visits.” But don’t accept the status quo if your gut is telling you it’s not right. If I hadn’t switched doctors when I was pregnant with Bean, she may not be here.

What I don’t know, is why it keeps happening to me. At least now I feel empowered to try to figure out why.

And honestly, part of me wants to have a definitive explanation about what’s wrong so that I can tell my girls when they want to start having babies (because when I think about the possibility that my troubles are genetic and that I may have passed this on to my girls, my heart literally breaks), but part of me wishes I could just chalk it up to “bad luck.” I will continue trying to seek answers for my girls.

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17 responses »

  1. Jen, I think you know exactly my thoughts on miscarriage or any type of pregnancy loss. Again, I am so sorry you had to go through theses losses before answers and still…not exactly knowing. My Haddie is here only because I had a proactive OB willing to do any test I requested including the progesterone testing and MTHFR mutation, both which were strongly believed to be the cause of my miscarriages. My progesterone never got above 11 with Haddie and with this pregnancy not above 8 even with supplemental hormone treatments. Your post is so great because it encourages women to be advocates of their own health and the future health of our unborn babies!

    • Lindsay, do you have two copies of the MTHFR mutation? Did your doctor recommend you take a baby aspirin or increase your levels of folate? I am praying for you and this new baby!

  2. My heart breaks for you and your family Jen. I give you credit for remaining strong and using that strength to find answers. Thank you for making your struggle public as I can imagine many women and families will find comfort in your words. ~ Kim

    • Hi Holly,

      The results of my tests in September 2010 showed that I have one copy of MTHFR mutation (C677T). Apparently it’s very common to have one copy of this gene mutation and unless someone inherited a mutation from both parents, it shouldn’t have any detrimental affects. When a person has two copies it can sometimes increase levels of homocysteine which can increase placque in the arteries and affect the way your blood clots and potentially cause miscarriage. I think this is why my midwife is suggesting that I get my homocysteine level checked as well. I found this information from the following Web site (http://circ.ahajournals.org/cgi/content/full/111/19/e289):

      “The most common MTHFR mutation is called the MTHFR C677T mutation, or the “thermolabile” MTHFR mutation. Another common mutation is called MTHFR A1298C. To have any detrimental effect, mutations must be present in both copies of a person’s MTHFR genes. Having only one mutation, ie, being heterozygous, is, from a medical perspective, irrelevant. Even when 2 MTHFR mutations are present (eg, 2 C677T mutations, or one C677T mutation and one A1298C mutation), not all people will develop high homocysteine levels. Although these mutations do impair the regulation of homocysteine, adequate folate levels essentially “cancel out” this defect.”

      • The Web site was from the American Heart Association’s Journal. Do you have any other information or insight I should take into consideration?

      • Jen,

        I know that many doctors believe that being heterozygous for the MTHFR polymorphism is “irrelevant”. However, women with the polymorphism do have a limited ability to break down synthetic folic acid (the type found in enriched foods and most supplements) to its active form, L-methylfolate. This puts you at risk for folate deficiency related pregnancy complications, regardless of homocysteine levels. I don’t know if you are a member at Babycenter but I don’t think I have ever come across a woman on those boards with repeat pregnancy loss who does not have the polymorphism. Many of them have changed the type of folate they are taking and believe this has led to successful pregnancies.

        I work with NeevoDHA, a prenatal specifically indicated for women with MTHFR. It contains active, already broken down L-methylfolate as an alternative to synthetic folic acid. L-methylfolate bypasses the MTHFR polymorphism and is 100% bioavailable for DNA synthesis and repair which is so crucial while trying to conceive and during pregnancy. It is something simple and completely safe that you might consider trying. With NeevoDHA you can be sure that MTHFR-related folate deficiency is not an issue for you.

        I am so sorry for your losses. I completely share your frustration with the fact that repeat pregnancy loss is often considered just bad luck. I am so glad you have found someone who is taking your medical history seriously. I will keep you in my prayers for a happy, healthy pregnancy in the near future. Best of luck Jen!

  3. Wow, I had NO IDEA about chromosomal testing! (Wish I would’ve known to ask about it when I miscarried at 12 weeks!) Anyways, thanks so much for being brave enough to write this post. It is so informative and a great resource for other women going through these tough situations.

  4. Pingback: My Natural Miscarriage Story

  5. My Dear Little Friend:

    I do not know you and just came upon your site. I am a Grandmother that has been through this with our daughter. I coule not help but cry because I know where you have come from. Our sweet little daughter had tried for quite a while to have a family and finally had IVF. It was succesful but at 20-weeks she was diagnosed with a baby that was not going to live. She laid on the couch for 10-days waiting for this little boy to die. Her mentally was such that she did not even want to take a bath or wash her hair. Just waiting for the last little heart beat. I would have done anything to take her place. One year later they tried again with IVF and it was succesgful again. This time it was twins. She was on bed rest from 20-weeks to 29-weeks, when they were born. Two little girls. They are now 6-years old and doing great. Surprise, surprise. They now have a little boy almost 5. Full term and healthy as can be. God is good. You are in my thoughts.

    Best wishes,

    Nanny

  6. Thank you for this post, i have learnt alot i have two losses my self and i have not being able to know why the doctors says that it is normal and i know it is not… please advice on what i can do am so desperate my second loss happened last year 20011 dec..

    • Hello Wambui, I’m so sorry to hear about your losses. My best advice would be to talk to your doctor again and ask him what testing he would recommend. You can use the tests I included in my post as a guideline. If you don’t feel like your concerns are being taken seriously, I would find a new doctor. Best of luck to you!

  7. This past Friday, my husband and I were excited to go to the doctor to hear the baby’s heart beat at 8 weeks pregnant. At 40 years young, I took my doctor visits seriously and absorbed every bit of advice given. I thought I was considered high-risk because of my age and history of fibroids. This was not the case, my first appointment was at the 5 week point and my next visit was at 8 weeks. Unfortunate for us, the ultrasound technician did not find a heart beat and casually stated that our baby’s size measured at 6 weeks. Indicating – that the baby had been dead for a week or more. I had been spotting and called the doctor about it. They said as long as it is pink, not dark red or clotting that everything is normal and maybe drink more water to ensure I am not dehydrated. I thought nothing of it.
    I have not miscarried yet (I don’t think). How would I know if my doctor did not offer any information about what would happen other than cramping pain and bleeding?
    Jen, I have to thank you for your transparency and and emotional account of how you handled your situation. I cannot thank you enough for the insight and education on the topic of miscarriages. You are right, it is NOT enough to hear the statistics and move on. THERE IS A REAL PROBLEM and women should know why the hell this is such a ‘common’ occurrence in pregnancy. while. I believe God allowed this for a reason, I also believe there needs to be more education and preventive care performed on the OB/GYN level. Again thank you.. Nia

  8. Pingback: 9 weeks or 4 ? – Miscarriage Emergency Room Fail | belly artist blog

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