Recurrent Miscarriage: My happy endings

I am somewhat pleased and sad to know that my post about Pregnancy Hormones and Miscarriage is consistently one of my top posts.  I wish I could hold everyone who comes by looking for answers.  I remember being there.  It’s still a healing wound that opens up from time to time.  I still grieve that I’ll never know those souls I lost.  Or do/will I?

Nutshell background:

After an uneventful first pregnancy that produced my 6 year-old daughter in 2004, I suffered three consecutive first term losses.  Getting pregnant has never been my issue; staying pregnant was becoming a real problem for my body and my psyche.  The last straw, the one that nearly killed me, was the 10-week loss, and the OB standing over me as I woke from the curetage telling me my uterus was too thin to ever consider a vagina birth, and this same OB wanting to put me on Clomid to treat my losses.  This OB had also refused to test my progesterone levels, saying that even if they were low she’d not treat for low progesterone.

Here’s what I had to do:

  • Change providers – I’m in a small town, so no one is super specialized in this area, but I at least found a doc willing to work with me; he had also dealt with infertility personally
  • This OB did ultrasound to check for PCOS (which he thought he found in me) and HSG to check for uterine abnormalities
    • PCOS markers may include u/s, but that’s not the only determining factor, so I ruled that out myself
    • The HSG showed an abnormality, alright; the OB thought it was a double uterus
    • I decided it was time to find a specialist
  • I found a yahoo group that supports women with Mullerian Anomalies (double uterus is a type of MA)
    • This group has an anonymous consulting doc who looked at my HSG film and believed the anomaly to be either a septum or bicornuate uterus shape
    • This group had a fantastic resource – a database of recommended reproductive endocrinologists and repro surgeons
  • Because I have family in Denver and was planning on being in Denver the Summer of 2008 for a voice science research program, I chose a RE in Denver.  Tough stuff when you’re essentially ‘out of network,’ but thank God we ponied up and did it.
    • The RE looked at my film and didn’t think it was a MA; he was sure it was a fibroid
    • SHG confirmed his suspicions
    • Extensive blood work revealed . . . LOW FRIGGIN’ PROGESTERONE . . . actually, really really crappy luteal phase progesterone (I am still so angry with the OB who refused to test my progesterone; I still blame her for that loss.)
  • The RE also recommended a myomectomy to remove the fibroid
    • He wanted to do it laparascopically which means cutting through connective tissue and the fundus to reach the fibroid
    • I didn’t want the integrity of my uterus further compromised and requested a hysteroscopic myomectomy instead; he agreed
    • Folks, do your research so you can advocate for your needs!!  I can’t stress this point enough!!!!
  • Thank goodness we did the hyst myo because instead of a regular fibroid, he found adenomyosis which he attributed to the PREVIOUS CESAREAN!
    • Hyst myo turned out to be the best way to remove as much of the adenomyosis as possible
    • Otherwise my uterus looked normal, no thin LUS, cesarean scar wasn’t even visible
  • This RE had a drug protocol that worked to address my progesterone deficiency
  • 3 months later my local OB examined my uterus via ultrasound and said that I was healed and ready to TTC!
  • I also made sure that the RE confirmed that the integrity of my uterus was not compromised from the surgery; my OB was nervous about ‘letting me’ VBAC

My happy endings:

I naturally conceived twins in 2008.  Luckily, I was in Denver over Christmas, and the RE was involved with my early pregnancy care.  My HCG levels were abnormally high, and an early early ultrasound revealed twins.  I enjoyed an easy term pregnancy (39 weeks!) with di-di twins!  My twins are such a blessing – can’t believe they’re almost TWO!

I became pregnant again in October 2010.  God has a sense of humor for sure.  I followed (more or less) the same treatment plan for low progesterone.  The first week of my pregnancy was stressful because I was having a hard time getting ahold of my OB and who had different ideas of how to treat low progesterone that conflicted with the RE’s protocol.  Can you believe this RE’s nurse was still supporting me through this stressful time . . . 2 years later?!  I was able to e-mail her and call her and they were willing to oversee my meds for the 1st trimester if I couldn’t get it worked out with my OB.  I had to ‘correct’ my OBs script a couple of times, and thankfully he was compliant.

Again, you have to advocate for what you need.  Right this minute.  Trust your intuition.  Know that infertility and pregnancy loss is more ‘art’ than ‘science’ at this point.  Know that there are widely disparate ‘camps’ when it comes to treating infertility and loss.

Currently, I am 37 weeks pregnant with my Happily Ever After baby.  May you find a way to yours!

On Becoming a Birth Activist

I’m surprised that more people don’t ask me how I became such a “questioner” of the maternal-fetal care system.  So I’ve had a couple of cesareans, but it’s not like I work in a health-related field.  What does opera singing and being a professor of music have to do with health?  More than you might imagine.

2004 – I was pregnant with my first child; I did all of the ‘right’ preparations – I chose a CNM over an OB based on the recommendation and experience of a good friend (such a RADICAL thing to do . . . choose a midwife over an OB!); I took childbirth education classes from an independent educator; I took prenatal yoga classes and stayed in pretty good shape for most of my pregnancy.  As far as I knew, the baby should have just ‘fallen out’ after all of that good preparation.  But it didn’t.

My hindsight quarterback post of this birth experience is posted here, but let me tell you how it made me feel.  Actually, after the stomach flu > labor and dilation from 0-9cm in mere hours > AROM to speed things up and end my misery > cesarean . . . I felt like a rock star.  It was the most intense experience of my life, and I ROCKED.  Just ask my hubby!  He still talks about how I went to some ‘place’ he never new existed.  I broke a ton of blood vessels in my eyes (yes, I was ‘purple pushing’ but no, I wasn’t only pushing ‘high’).  I was still violently ill after the cesarean.  I had to send the baby to the nursury some.  My hubby had to leave because he caught the GI ‘death and destruction’ bug too.  (So did MIL!)  A lot of things went wrong . . . others were just far from ideal, but whatever.  I survived and a lot of things went right too – I recovered quickly from the surgery; breastfeeding was easy for me and my DD.  I was performing by 8 weeks post partum and took a few on-campus final interviews for University jobs.

Feb 2005 – I had my post-partum appointment with the doctor who performed the surgery.  For the first time, and I don’t know why this was the case, I heard . . . really heard . . . things like “risk,” “uterine rupture,” “dead baby,” “brain-damaged baby,” “repeat cesarean,” “VBAC,” and the like.  How did this happen after all I did to ensure that I went against childbirth norms!  Why me?!!!

In the heat of the moment when you’re feeling distressed because pushing isn’t relieving the pain or bringing your baby closer to you, the cesarean can seem like an easy way out.  I pushed for several hours . . . I resisted pushing when waiting for the OB and then waiting for the surgery.  When the OB arrived, she was pretty sure she could help me get the baby out vaginally.  However, she quickly gave up and fairly nonchallantly suggested the cesarean.  I was READY!  Phew, being ‘stuck’ like that sucked, and no one was really helping me get ‘unstuck.’  I didn’t have a doula (because I didn’t think I needed once since I hired a CNM); DH didn’t know any more or less than I.  I was totally relying on the medical providers.

Why do OBs not feel the need when childbirth hits a major roadblock to really explain the consequences of the next step?  I wasn’t in distress.  My baby wasn’t in distress.  The OB could have said, “Now Kimberly, you’ve been such a strong mama through this, but I want to offer you a cesarean as an option.  Before you agree to it, let’s talk about what happens and what impact this decision may have immediately and for future births.”  There was time for this discussion, and it’s not like she was busy with other patients . . . this was 3 or 4 am!

Please care providers, you MUST let us participate in our health care decisions.  We need information before we can make life-altering decisions like these.  When there is time to inform us of the benefits and consequences of interventions, you are ethically obligated to do so.

July 2007 – I became pregnant again, and a couple of gals from my 2004 due date club reminded me about ICAN.  I joined their Yahoo group and dove in.  My eyes were opened and resentment poured into every corner of my existence.  I lost that baby.  I lost the next baby.  I stuck with ICAN, began a local chapter, and brought The Business of Being Born to an indy theatre in town.  I lost another baby.  I found a new doctor who found new things wrong with me.  I struggled for my life.

Summer 2008 – I was going to spend the summer in Denver doing research.  I began looking for a reproductive endocrinologist so that I could get some answers.  Why these chronic losses?  Why this misshapen uterus?  I continued to struggle for my life.  The RE diagnosed what I suspected – really crappy progesterone.  He also believed that the misshapen uterus was not a didelphic uterus but a fibroid.  He wanted to do a laproscopic procedure to remove the fibroid; I insisted on the less invasive hysteroscopy.

He didn’t find a regular fibroid . . . instead he did his best to remove adenomyosis without compromising the integrity of my uterus.  He believed the adenomyosis was caused by the cesarean surgery.

By this time I was pretty disenchanted with traditional obstetrics.  I had been misdiagnosed or refused diagnoses too many times.  I had lost three babies.  I became aware that the cesarean had a negative effect on my ability to have more children.

Current – I hope by now that readers understand that this isn’t about hating cesareans or hating interventions.  Not at all.  What I have ‘hated’ is:

  • Not being asked to participate in my health care decisions ~ How does NOT having women participate in their health care serve mothers and their babies?
  • Being made to feel like ‘one of those’ patients for conducting my own research and presenting contrasting information ~ How does being an oblivious patient help mothers and babies?  How does being an empowered patient hurt mothers and babies?
  • Being denied tests and appropriate treatments that may have helped prevent another heart-wrenching loss 😦
  • Being made to feel like my body just doesn’t work; being taught to be afraid of my body; being taught to not trust my body’s wisdom ~ How does making a woman feel badly about her body and breaking down her trust in the physiologic process of birth help her and her baby?
  • OBs using scare tactics to win compliance ~ Moo??
  • OBs putting their own beliefs about risks (what’s worth it or not) over their patients’ prioritization and contextualization of risk ~ How does putting medico-legal risks above the health (mental, physical, emotion) of the mother-baby dyad help mothers and babies?
  • OBs turning a blind eye to the fact that women may suffer from birth immediately (in the 0-6 week post-partum range) and long term (I was still in acute pain after my last cesarean 1 year post partum); once the ‘healthy’ baby has been ‘managed’ out of the birth canal or uterine incision, it seems as though that’s where their responsibilities end, especially if he or she is not the patient’s regular doctor ~ How does making mothers in the post-partum period low priority patients help mothers and babies?
  • Exaggerating the benefits of intervention and minimizing the risks to the mother-baby dyad ~ How do increased interventions really help mothers and babies?  Are you sure about that??
  • Doctors who aggressively undermine the valid experiences of homebirth midwives and families who choose to birth their babies away from the ‘comfort and safety’ of the hospital campus ~ How ’bout cleaning up your own backyard before you start worrying about mowing someone else’s?  And again, I ask . . . how does tearing down a valid though very different care system serve babies and mothers? 

This.  This is how one very mainstream person becomes a birth activist.  It’s not about hating on specific people but exposing the inadequacies of operating solely in one mindset with regard to health.  The sooner the medical, public health, and alternative care perspectives can truly collaborate, the better health care in the US will be.  This will require a radical shift in thinking and practice, especially from those entrenched in the medical model.

Coda – why an opera singer and music educator should care about birth?  I am of the opinion that the entire body is the vocal instrument.  Impairment of any part of the body can negatively impact the singing voice.  Particularly the trauma done to the lower abdominal region during a cesarean section need to be avoided.  The abdominal complex is the primary source of support for the singing voice.  Interventions and distruptions to this part of the body can have long-lasting negative effects on the singing voice.

Additionally, music gives us the opportunity to engage seemingly unrelated fields.  My dissertation dealt with gender subversion in modern opera.  Really, how different is this than the institutional hegemony of maternal-fetal medicine.  The female body is still a battle ground.

Hospital VBAC: The Don’t Forget List

[NB: Most of what I’ve written below applies specifically to the hospital venue.]

We all know the books to read when preparing for a VBAC or the videos that will help us gain confidence in our ability to give birth vaginally.  We all know to pack our hospital bags, including our mental focus recordings, and bring a copy of our birth plans.  We all know that we need a doula with us, one who is experienced supporting VBACing women. 

Many of us even know that we need to talk powerfully about our upcoming VBACs.  “I’m trying for a VBAC” is not nearly strong enough.  Replace that with “I’m planning a VBAC.”  Did you birth the first time with “I’m gonna try to give birth vaginally” going through your brains?  Probably not.  I myself never doubted my ability to give birth naturally.

Anyway, I digress.  In addition to constructing a clear but concise birth plan, you need to also do the following:

  1. obtain a copy of the hospital’s VBAC consent form; review it and make changes as you see fit; give a copy to your care provider and bring a copy with you to the hospital
  2. obtain a copy of the hospital’s cesarean consent form; review it and make changes as you see fit; give a copy to your care provider and bring a copy with you to the hospital.  My hospital doesn’t have a cesarean consent form.  They have you sign their generic “invasive procedure” form which I find unacceptable.
  3. discuss the modifications you’ve made to the above forms with your care provider(s)
  4. especially if you’re NOT married, make sure your will is in order
  5. make sure you bring a medical power of attorney in case medical decisions need to be made and you are incapacitated

Bruce Flamm’s VBAC consent form appears everywhere on the internet.  I personally didn’t find it sufficient, but it is a place to start.  Here’s a great post – an actual cesarean consent form with some added commentary from the blogger.  I’ve taken this form and modified it so that (1) consent is not given for elective cesarean; (2) consent is withheld until the situation would arise for an emergent cesarean; (3) my husband is named as having power of attorney in the case of an emergency where I was unable to make my wishes known.  I also added some things that were missed on the form.

Please ask questions or offer your own suggestions!

CNN: Empowered Patient

Today I have the luxury of time and relaxation.  After walking (yep, that’s right) my daughter to daycare, I returned home and swept out the garage.  I finished at 9:30am and have the entire day ahead of me.  I digress.  As I was sitting on my bed checking my e-mail, I discovered that CNN was discussing how women make mistakes with regard to healthcare.  This does not apply to soft-spoken women alone; in fact strong women like me have a hard time demanding the care that we deserve.

This article at CNN discusses resources for various health issues that women face.  Dr. Christine Northrup shares a few gynecological resources.  I hope that the media continues to reach out to female consumers and remind them to be proactive and empowered in their health choices.