RPL Update Number I Lose Count

I started writing up a big post about the more recent developments in my journey through recurrent pregnancy loss.  I still need to finish it up, but in the meantime, he’s a quick update:

  1. In August I had a hysteroscopic myomectomy done in Denver.  The idea was to hopefully remove a fibroid that was bulging into my uterus.  Instead of a fibroid, the surgeon found an adenomyoma located directly above my cesarean scar.  I have to review my records from my 1 successful pregnancy to determine whether or not the fibroid that was present during that pregnancy changed into this adenomyoma.  Otherwise, it is likely a lovely by-product of the 2004 cesarean section that was performed on me and my daughter.
  2. I have a substantial progesterone deficiency.  Progesterone levels should not drop below 8-10 in 2nd luteal phase draw, and mine dropped to 3.  I will have to have HCG shots during the luteal phase and progesterone shots during the first trimester to support the corpus luteum and developing baby.  It makes me INSANE that the last OB I asked to test my progesterone outright refused.  I lost that baby, obviously.
  3. I have to wait until November to have an ultrasound performed to let me know if my uterus and endometrium have repaired from the surgery.  Then we can talk about ttc.

That’s my nutshell.

Anomaly

Anomoly.  Congenital.  Rare – in my case occurring in 0.1-0.5% of women or possibly as high as 10% in women with recurrent pregnancy loss[1].

On Monday I had a hysterosalpinogram (HSG) done to check the lining of my uterus for abnormalities potentially caused by a cesarean section in 2004.  My doctors and I are not finding good reasons for repeat pregnancy loss.  My lupus anticoagulant panel came back clean, and the only test left to do in my current OB’s mind is an ANA.

As a result of the HSG, I was diagnosed with uterus didelphys, one of several Mullerian Anomalies.  The OB is certain that this is the cause of my recurrent losses though still recommends the ANA blood draw.  He doesn’t think I need to proceed with a thrombophilia panel.  He didn’t offer any course of action for this issue, suggesting that we should just “keep trying.”  He was surprised that this hadn’t been diagnosed sooner.

Of course, being the curious person that I am, I performed internet searches for “double uterus,” “didelphic uterus,” and “uterus didelphys.”  I also chatted with an internet friend who put me in touch with a couple of other people who have been diagnosed with anomalies.  I have joined a yahoo group that deals specifically with these anomalies.  Even a couple of hours after the procedure, having looked at many pictures on the internet, I began to have doubts about my diagnosis.

I will obtain a copy of my HSG “picture” hopefully today from the radiology lab.  When I compare what I remember seeing on the screen at the hospital with what I see on the internet, I think it’s more likely that my uterus is bicornuate (heart shaped) and/or possibly contains an uterine septum.  A septum would be most problematic for maintaining a pregnancy because if the baby implants on the septum, it will not have enough vascular support to grow.  (This just breaks my heart.)

What next?  I am going to be in Denver for a couple of months studying vocology (vocal science).  (I need a calculator and to remember my college physics class from 1990, eek.) I am looking for a reproductive specialist there who will do a thorough investigation of immunological, endocrine, and structural causes for my losses.  It is possible that the immunological path has been exhausted, but with my mother’s history of autoimmune disease, I’m not so sure.  Endocrine/hormone issues haven’t been addressed to my satisfaction.  Neither OB group I have worked with in town believe in progesterone deficiency.

So, that’s my story in a nutshell for now.

[1] Müllerian duct anomalies are estimated to occur in 0.1-0.5% of women. The true prevalence is unknown because the anomalies usually are discovered in patients presenting with infertility. Some women carry babies to term with anomalies, so it could be more common, possibly as high as 3% of all women.  Sources: http://www.emedicine.com/Radio/topic738.htm; http://www.seattlefertility.com/treatmentOps_UterineAnomalies.htm

Upcoming Interview

In about an hour I will be interviewed for a local news station regarding Montana’s cesarean rate.  I don’t know much more than that.  The reporter has a young child.  The reporter is supposed to be meeting with a local hospital official.  Other than that, who knows what her focus will be.  In anticipation of this interview, I decided to review some things that I have read and wrote regarding cesarean rates.

With regard to rates, it is important to consider that the US cesarean rate (2006, preliminary) is 31.1%.  The rate has increased by 50% since 1996.  The rate recommended by the World Health Organization is 10-15%.  Once the cesarean rate exceeds 15%, the risks (statistically speaking) outweigh the benefits.  The Montana cesarean rate (2006, preliminary) is 28%, nearly a 3% increase from the year prior.  According to a source at the local hospital, our local rate is around 31%.  I was told that only 16 VBACs took place in 2006 at my hospital.  (A local CNM questioned the accuracy of the VBAC figure, suggesting that VBACs were under-reported.)

I can list many contributing factors to the continued increase in the cesarean rate:

  • Medico-legal concerns on the part of doctors, hospitals, and insurance providers (it’s HUGE, actually)
  • “So and so had a cesarean . . .”
  • Hollywood stars having elective cesareans
  • Young and underpriviledged mothers are more at risk for cesarean surgery
  • An unchecked trust in care providers – most women do not seek second opinions when it comes to maternity services
  • Sensationalization of birth – Baby Story and OR Live come to mind
  • Society – our view of birth has changed; the culture of fear has spread to childbirth
  • Cesareans ARE more safe now than they ever have been

Of course I’ll direct the reporter to resources such as:

  • ICAN
  • The Mother-Friendly Childbirth Initiative
  • Childbirth Connection
  • Conscious Woman

The Cost of Miscarriage

It’s been a while since I posted last.  I guess it’s that time in the semester where I’m so busy teaching, advising, and attending events that I have no time for anything else!  Plus, I had a major job during a “Super Regional” conference that took place in my town last weekend.

I have received a couple of bills from my 2/23/08 miscarriage:

LEVEL 4 HOSPITAL SERVICE

  • Recovery phase 1 lvl 2 per hr $419.25
  • Path group 3 122.00
  • Venipuncture x 2 26
  • ABO group 38.50 (they had access to this info)
  • RH type 31.25 (I told them I was RH+)
  • Antibody screen 83.50 (???)
  • CBC 48.25 (narrowly avoided a transfusion!)
  • surgery major 1 1207.00
  • set up for surgery 641.50
  • anesthetic 42.50
  • propofol 80.11 (damn, that had better have been good stuff!)
  • lidocaine 7.50
  • sevoflurane 231.20 (now, THAT better be good stuff)
  • metoclophramidercar (say that 3 times fast) 16.38
  • dexamethasone 16.38
  • fentanyl 16.38
  • hydromorphone 16.38
  • ondansertron x 2 32.76
  • fentanyl 16.38 (again?)
  • recovery/observation 75.00
    GRAND TOTAL: $3168.22

That’s what a curettage (following/during miscarriage) costs you (or more).  When it’s all said and done I’ll owe $650.29, plus I received a $97.00 bill for the follow-up with the OB.  It should have been a $15.00 copay, but since they coded it maternity, my insurance company isn’t paying for it, claiming that it’s covered under my global (maternity) copay.  THANKS FOR THAT NICE SWIFT KICK TO MY BROKEN UTERUS.

Still, nearly every moment of every day I remember what I have lost this past year.  And there’s no hope yet of moving past it.  There’s always tomorrow . . .

Sharing Cesarean Awareness

I found this on ICAN’s eNews (www.ican-online.org/community/eNews/) and want to share it with those who maybe aren’t (yet) subscribers!

Cesareans Affect Lives. Real women, real babies. Lives changed.

How has your cesarean impacted you? Come to www.ican-online.org and blog about your experiences in 100 words or less, tell us your story.

Cesarean Awareness:
is not only about the “bad” cesarean and recovery
is not about guilt for not succeeding at VBAC
is not about not attempting VBAC
is a state of being, whatever that may be for you or me – hope, fear, acceptance, sadness, depression, thankfulness
is about doing the research to understand the reality of the risks taken on every time another mother has another surgery

ICAN is about all birthing women having access to that information.  Cesarean Awareness Month is about encouraging the spread of that information.  We want to encourage you to find a way to spread the awareness in your community. Wear your ribbon. Write on your car. Buy brochures to drop off in the library. Put up a poster at your work. This is about open communication about the health of our women, babies and families.

April: Cesarean Awareness Month

Cesarean Awareness Month (CAM) is an internationally recognized awareness month which sheds light on the impact of cesarean surgery on mothers, babies, and families worldwide.  Cesarean birth is major abdominal surgery for women with serious health risks to weigh for both moms and babies.  Cesareans may be safer now than they ever have been, but this surgery is being conducted more frequently than is prudent or safe.  The acceptable rate established by the World Health Organization (WHO) is 10-15% – what is your community’s cesarean rate?

The blogosphere is atwitter about Cesarean Awareness Month.  Here are some posts I found today that deal directly with CAM:

  • Instinctual Birth’s post
  • No Womb Pod’s post
  • Strain Station’s post
  • Cesarean Awareness’s post
  • CT Birth Experience’s post
  • She Got Hips’s post
  • CT Doula’s post

If you have blogged about Cesarean Awareness Month and don’t appear on my list, please leave a comment so we can read your post.

To learn more about cesarean awareness, support, and education, visit the Internation Cesarean Awareness Network (ICAN) website and/or look for a chapter in your area.  Another great resource to consult when weighing the benefits and risks of intervention in chilbirth is Childbirth Connection.  Also, I recommend looking at and considering the Mother-Friendly Childbirth Initiative.

How do you plan to honor Cesarean Awareness Month?  How can you let people know that natural birth is an important issue for you and for them?  I promise that there is some way, no matter how small it may seem, that you can have a positive impact on your birth community.  Even wearing a cesarean awareness ribbon several days this month will help.  If you need ideas, feel free to ask.

Recurrent Miscarriage Update

I had a follow-up appointment yesterday with the OB who performed the needed curretage a few weeks ago.  I can’t say that I really learned anything helpful from the meeting. 

Pathology on the baby came back normal though apparently no chromosomal analysis was done.  I hadn’t realized that the pathology would only rule out ectopic or molar pregnancies.  I already knew from the ultrasound that neither of those were concerns.  So that was a costly dead end.

Chromosomal abnormalities?  Perhaps, so she recommends testing for both me and my husband.  I assume that we will go ahead and do that.

Progesterone deficiency?  Perhaps, so she recommends taking Clomid when I’m ready to conceive again.  I was not previously aware of using Clomid to treat potential progesterone deficiency or apparent “luteal phase defect.”  Since I ovulate on our around the 15th cycle day, I don’t think LPD is my issue.   However, I’m not ruling out some sort of hormone imbalance.  When I’ve had HCG levels tested, those numbers have been just fine.  But I’ve never had my progesterone level checked, and this OB wouldn’t do it anyway even after Clomid treatment.  I find that odd.  What if the Clomid wasn’t quite enough to sustain the corpus luteum until the placenta takes over?  Wouldn’t it make sense that I could still possibly need progesterone supplementation even after conceiving on Clomid.  (Remember that I have no conception problems; I’m just “failing” to sustain pregnancy right now.)

Immunological problems?  Not suspected though I am inclined to disagree.  I have a history of endometriosis, depression, low energy, and adult onset acne, for instance.  My mother has rheumatoid arthritis which is an auto-immune disease.  I rarely feel particularly “great,” but then again, given what I’ve been through this past year it would be hard to identify a great day even if it was right under my nose.  I found the Reproductive Immunology Associates’ information on miscarriage prevention to be interesting, encouraging, disheartening, and overwhelming.  I will pursue some of these ideas with local care providers.

Next month I will follow-up with another OB in town.  I may also go see an endocrinologist who has been recommended.  There are evidently fertility specialists as near as Spokane, so perhaps I should be contacting them?  I have so many questions, and I don’t know if I’ll ever find answers.  That’s perhaps the scariest part.  At this moment I think I could deal with being told that trying to conceive again would not likely be successful for X, Y, or Z reasons.  We do have one incredible child, and I might be inclined to consider adopting from abroad.  But to have to deal with the unknown is what really worries me.  Three miscarriages in a row “just” bad luck?  How will I overcome that “diagnosis” if it is the most likely deduction?

Time will tell.  Each day is different.  Some days are ok and some are not.  I am living moment to moment, hour to hour, day to day.  Planning ahead for anything is excrutiating.  But “ahead” will come whether I like it or not, whether I can deal with it right now or not, and whether I can deal with it then or not.