Caring for Women Who Suffer Birth Loss

I posted the information below elsewhere on the internet in response to a request for advice regarding care protocol for women who experience miscarriage or stillbirth.  I am amazed at how upset I got just writing these seven points.  Women who miscarry or otherwise lose their babies are treated so strangely.  I’ve been reading a terrific book called Motherhood Lost which looks at birth loss from a feminist perspective.  It really speaks to me, so click on the link and check it out.

For what it’s worth, here was my personal advice regarding birth loss “care” – something we don’t always experience when we’re being “treated”:

1. Take women having active bleeding IMMEDIATELY to a room. Don’t make them sit bawling their eyes out around other pregnant women or in a horrible ER waiting room.2. Don’t subject them to unnecessary protocols when they make a request – I was “forced” to accept a heplock, and not only was it completely unnecessary, but the nurse sucked at getting it into place.

3. Don’t tell a woman (especially when you’re not her provider) that she put the pregnancies too close together and that she pushes herself too much. We already blame ourselves enough.

4. Don’t misread ultrasounds. Misread ultrasound leads to misdiagnosis which further complicates care and treatment. Because of this misdiagnosis, I was treated like a woman who wasn’t miscarrying “correctly” instead of a woman experiencing “threatened miscarriage” due to a subchorionic hematoma.  5w4d may be too early to see a fetal pole, and the presence of a yolk sac implies the existence of a fetal pole.  I did NOT have a blighted ovum.

5. If your patient miscarries over the weekend . . . follow-up with her. It’s the least you could do.6. Make the billing process more clear and more simple to digest. I don’t know where all of my bills come from and why I continue to have to pay so much out of pocket. I thought I had insurance???

7. Make sure you have RESOURCES to share with your patients/clients in the form of personal support, support groups/networks, reading materials, etc.

Yeah . . . all of this (and more, I’m sure) I experienced with my 10/07 miscarriage. That was my one and only experience with our local hospital. I won’t be going back there unless I’m seriously dying.

Post-miscarriage rollercoaster

Because I get so many hits on my site from others who are struggling with miscarriage, I feel compelled to continue blogging about my journey.  I have suffered back-to-back miscarriages this year, a spontaneous miscarriage on August 1 followed by a subchorionic hematoma on October 7 that terminated my pregnancy by October 15.  My DH and I decided to take a break from trying to conceive until we could perhaps discover a reason for the repeat back-to-back miscarriages.  I am now at a point where 66% of my pregnancies (2 of 3) have failed.  I am now considered high-risk for future miscarriage by my care providers.  Some care-providers don’t even sneeze at 2 miscarriages, but I’m glad that mine have been proactive even if they don’t agree on the causes and potential remedies for my problems.

On Thursday I had an herbal consultation with a direct-entry midwife (DEM).  She may become my midwife in the future, but for now we’re working to get my body back on track.  She suspects that dysfunction in one or more of my regulatory systems is preventing me from sustaining my pregnancies.  The systems/organs that seem to be out of whack include endocrine, thyroid, liver, and adrenal.  This lines up with the feedback I get from my chiropractor every week.  She has recommended an herbal tincture comprised of vitex, auralia berry, black cohosh, and a couple of other things.  I should stay on this treatment for three months before becoming pregnant.  Then the tincture would need to be adjusted as some of the herbs are not recommended for pregnancy. 

On Friday I finally had my follow-up appointment with the OB who managed my miscarriage.  She is not the careprovider with whom I planned to establish, but at this point, I’d rather continue care with her should I need assistance from a medical provider.  She’s a nice gal and very supportive of natural childbirth.  She helped my friend deliver her baby vaginally during a placental abruption.  Anyway, she recommended some blood tests (antibody and anticoagulant) and consented to testing my thyroid as well.  She doesn’t believe I have a luteal phase defect even though my last cycle was only 26-days long and I bled in the middle of the cycle.  (I bled during ovulation when I got pregnant this last time too.  The herbalist thinks I may have a progesterone deficiency.)  Instead of doing progesterone tests, she would recommend an edometrial biopsy.  Eeek!  I really haven’t been satisfied with the information I’ve found on the internet.  I’ll probably consent to one if I have another miscarriage, but I think I’ll give these herbs some time to work.  The OB does not recommend chromosomal testing at this time.  If anything conclusive arises from the blood tests, I will post the information here.

That’s it in a nutshell.  The holidays are tough – I have a number of friends who are pregnant or have just had new babies.  I expected to have a cute pregnant belly about now.  I never would have thought I’d be grieving two lost babies this Christmas.  I do have plenty to be thankful for – my amazing husband and lovely little girl, a good job, a loving family, wonderful friends, empowering and humbling advocacy work through ICAN, and a good life.

Miscarriage Aftermath SUCKS!

After doing some research I am more conflicted about the causes of past and likelihood of future miscarriages.

I’ve read Lesley Regan’s book, Miscarriage, which was recommended to me and haven’t been comforted by it in the slightest.  The most helpful information is contained in part 3, a section of FAQs.  By the time I reached that section I was “over” the book.  Part 2, “Understanding the Causes”, does not live up to its title.  I certainly don’t understand the cause(s) of my miscarriages from reading this book.  I don’t know if I’m a sporadic or recurrent miscarrier or what if anything can be done to assist me.  I don’t know what kinds of tests might be offered to me or other tests that a regular OB with limited experience in reproductive endocrinology might not know to request.  Furthermore, the book is out of date having been published in 1997.

 Regan does not believe that low progesterone is the cause of miscarriage but rather a symptom.  “The die is cast.” (129)  Ick.  Low progesterone means that there’s something wrong with the eggs that are released or the corpus luteum.  Ok, so follow up with something helpful like . . . “so instead of progesterone therapy, it is recommended that . . .”  For women with a history of recurrent miscarriage, luteal phase defect is a common cause.  However, no follow-up information for non-IVF “patients” is presented.

And it’s not like the “experts” agree.  For instance, there’s this article about preventing miscarriage.  The title, Miscarriages can be Prevented, is a tad ludicrous.  Maybe some can be prevented, though I’m not even sure.  But for what it’s worth, this site claims 5 main reasons for miscarriage.

Cause Percent
Infection   1%
Anatomy abnormal   5-10%
Progesterone level low   20%
Chromosome abnormal    
   Primary miscarrier (no live births)   7%
   Secondary miscarrier (one or more live births)   50%
Immune mechanisms   50%
Unknown   15%

This information strongly contrasts with Regan’s book and with information posted at this infertility blog that I stumbled upon.  This NY-based doctor has been in the infertility business for 15 years. 

Regarding luteal phase defect, he states:

In general, most reproductive endocrinologists do not believe in the luteal phase defect [though Regan does] and do not test for it. In the old days, doctors would use progesterone clomid or FSH to treat the supposed defect, and today women are getting on those meds more quickly than before. And it takes time; months and months can go by while you’re waiting to see if the progesterone is working. In most cases you don’t have the time to waste.

I realize there are some of you who were diagnosed with luteal phase defect and were given progesterone with great success. I am very happy for you, but your success is the exception, not the rule.

So like Regan, he believes that weak progesterone signifies an ill-fated pregnancy.  Very few women actually have LPD or do recurrent miscarriers have LPD/hormonal issues?  So very few women will benefit from progesterone therapy?  Though the chart above indicates that a substantial rate of miscarriage happens because of low progesterone.  Chicken and egg??

From what I can tell, direct entry midwives (DEMs) turn to progesterone supplementation for women like me.  In fact, a DEM I know suspects that I have a progesterone deficiency.  Perhaps this is why I needed progesterone to stop my irregular periods that were caused by the Nuvaring falling out (unbenownst to me) this past March.  Perhaps this is why I lost my summer pregnancy.  Maybe this is why I spotted in my first post-miscarriage cycle around ovulation time.  Maybe that’s why I lost my fall pregnancy.  Perhaps this is why I spotted again in the middle of this cycle – the first one following my recent miscarriage.

Ronnie Falco is a well-respected midwife who archives at Gentle Birth.  Here is information she has gathered on potential causes of miscarriage and how to possibly prevent miscarriage.  Scroll down to the information on progesterone, and you will find much disagreement on the relationship between progesterone and miscarriage.

I came across a forum at Ovusoft that contained an informative thread regarding progesterone.  I also post from time to time at Misdiagnosed Miscarriage and recommend that site to anyone who is experiencing or has experienced a pregnancy loss.  I plan to check out these links at a low progesterone site I found via Misdiagnosed Miscarriage.

And now, truthfully, I’m worn out from this post.

Completed Miscarriage

My ultrasound this afternoon confirmed what I already knew: that I lost the pregnancy yesterday and that I have a fibroid.  The ultrasound technician confirmed what I recently learned – that I was misdiagnosed last week with a blighted ovum.  Not only was it too early to diagnose a blighted ovum, but the presence of the yolk sac means that it was NOT a blighted ovum.  Likely the large subchorionic hematoma lead to the eventual miscarriage.

It’s been a rollercoaster ride of a week: threatened miscarriage, started a new chapter of ICAN, stayed in bed and hid from the world, put off all responsibilities onto other people’s shoulders, posted, researched, prayed, cried, hope, despair, loneliness, overwhelmed, frustrated, angry, confused, trusting, untrusting, and the list goes on and on.

So what’s next for me?  A make-over?  I dunno.  I’ve consented to having the OB monitor my pregnancy hormone levels down to 0.  Then I will have more bloodwork done to see if there’s anything more serious wrong with me.  The fetal tissue will be sent for pathology analysis.  I’ll keep teaching.  I’ll get back to singing.  No choices there.

I’m putting a lot of time and energy into ICAN.  I feel good about that.  I’m in the process of planning a sneak preview of The Business of Being Born.  I’ve been getting a lot of great support from ICAN leaders for both the preview and the start of this new chapter.  And Barranca Productions put me in touch with a woman here in town who was looking to schedule a screening of The Business of Being Born.  Now she’s working with me to help me make it happen.  I’m so thankful to have connected with her and can’t wait to meet her!

What else?  Well, I have a big Halloween Party to attend next weekend.  I may also attend a public discourse conference in Bozeman.  This weekend we were invited to a brunch hosted by the President of the University and to the game, but instead I plan to be at the Farmers’ Market promoting ICAN of Greater Missoula and our inaugural event!

Currently Reading and Researching

Since I am at home bleeding with nothing else to do . . . I have been doing a lot of reading and research.  I don’t have the mental fortitude to break it all down into individual posts, so here is the “cluster eff” from yesterday and today:

Homebirth: Safety & Benefits, courtesy of Ronnie Falcao, LM MS – even though her site isn’t stylish, the information is good

Misdiagnosed Miscarriage Site and Forums – lots of food for thought here . . . and very good examples of why women should not do a D&C unless they are unable to miscarry naturally. . . and why women shouldn’t take cytotec to induce abortion.  Check out their Blighted Ovum FAQ.

Please watch this video on the awful things that cytotec induction (in labor and delivery) can do.  Cytotec is an ulcer medication and is contraindicated for pregnant women!!!

Related – “Drugs, Knives, and Midwives: The U.S. maternity care system is in crisis. A grassroots movement to save it is under way” by Elizabeth Larsen, Utne Reader, March/April 2007.  I’ve looked it over but will read it thoroughly today.

I liked this “Helping a Friend Through a Miscarriage“.  Please consider reading it if you’re helping a loved one deal with this tragedy.

I’m certainly more wary of ultrasound these days and regret that I had to have one of Sunday.  (Some may rightly say that I didn’t have to have one on Sunday, but they’re not walking in my shoes right now.)  Yesterday I read Rodgers’ “Questions about Prenatal Ultrasound and the Alarming Increase in Autism” from Midwifery Today, and that scared the crap out of me.  Today I will read Wagner’s “Ultrasound: More Harm Than Good?” and Beech’s “Ultrasound: Weighing the Propaganda Against the Facts”.  I recommend anyone considering ultrasound during pregnancy to look at Kmom’s compilation (2003).

Read some of these testimonials from women who suffered through subchorionic hematoma!  I’ve found this thread very encouraging.

I’m also trying to locate a copy of Lesley Regan’s miscarriage book.  Too bad the local library and the University library don’t have this book.  If anyone I know can loan me a copy . . . I’d sure appreciate it.  Also, feel free to share your favorite miscarriage resources in the comments section.