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

Infertility Update

I have a child and yet I am experiencing recurrent pregnancy loss.  It’s a strange subset of infertility.  I’m trying to hunt down bloodwork results from 10/07 so that my current OB, who is more specialized in infertility, can fill in the gaps.

All of my bloodwork came back fine though I don’t yet know the exact numbers for anything but TSH.  The bloodwork that was done included TSH (I was normal at 1.3), prothrombin time (PT), thromboplastin time (APPT), russell viper venom (dRVVT), and flow cytometry

I saw a new OB this month.  In addition to a HSG for potential structural problems with my uterus due to age and/or the previous cesarean, he recommends testing for inherited thrombophilia.  He will also fill in any gaps that may exist with regard to bloodwork.  From what I can tell, there indeed are more tests that need to be run before I can rule anything out.  For instance, some women with lupus anticoagulant (LA)actually do have normal APTTs.  He does not think we should waste our money on genetic testing.  Also, anticardiolipin is similar but not the same as LA.

I was really disappointed to learn that the only pathology that the former OB’s office does is just confirm whether or not the tissue is normal (not infected) pregnancy tissue.  No immunologic analysis typically takes place.  In my case, I have twice wasted $116.00 on this.  Luckily my insurance provider does pay for most of this cost.  However, I have just discovered that I could still have tests run.  Evidently, slides are preserved by the pathologists in parafin blocks, and they can be sent off to labs.  Click here to read about this.  I can somewhat vouch for the information on this site since my current OB mentioned Dr. Beers several times during our consultation.

More information:
Alan E. Beer Center for Reproductive Immunology and Genetics (link to research page)
Reproductive Immunology Associates (link to miscarriage page)

i should have

I should have a newborn.  I should be on sick leave (my University doesn’t really have maternity leave for faculty) and tending to my fresh baby.

I should be in my 3rd trimester getting ready for my June due date.  This baby’s due date couldn’t have been more perfect.  I should be getting all kinds of pregnancy attention from strangers and friends alike.  I enjoyed basquing in the limelight when I was pregnant with my daughter, and I loved being pregnant.

I should be 18 weeks and 2 days pregnant.  I should be feeling my baby move, and he should be responding to me in utero.  I should be enjoying my pregnancy with my best friend who is also pregnant, about 14 weeks by now I believe.

I shouldn’t have medical bills that I don’t understand.  I shouldn’t be waiting nervously for late menses so that I can schedule a HSG.  In fact, I shouldn’t be having menses at all!  I shouldn’t be grieving daily for three lost pregnancies, drinking heavily, sleeping poorly, putting on weight, avoiding exercise, stressing about the past, stressing about the future.  This shouldn’t be my life.  This shouldn’t be anyone’s life.

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 . . .

Inexplicably tough days

Why has today been such a tough day?  I really can’t explain why I am so down in the dumps.  I think there are enough “reasons,” but I must not give in to them.

This morning I woke up somewhat disoriented because DH’s alarm clock is CRAZY.  So, I thought I was already late for the brunch we scheduled with friends, and somehow that set the tone for the rest of the day.  On our way to our friends’ home we stopped at a local bakery.  I ran into a midwife/herbalist who had been helping me before her mother fell ill.  It was the first time we had talked since my miscarriage.  That continued to establish the tone for the rest of the day.

We proceed onward to our friends’ home.  These are our best friends in town.  My girlfriend is now 11 weeks pregnant, and it’s really really tough.  Of course I am thrilled for her and relieved that all is well with her pregnancy.  But I’m also mad as hell.  It’s a hard place to be – for both her and me.  We had invited another couple to brunch who are considering a move to our town.  They have 2 kids, so of course there was lots of talk about kid-related issues, and my friend’s pregnancy, and whether or not we were going to have another baby.

I had a good conversation today with a friend of mine who has been down a different but no less significant miscarriage path.  She forwarded some threads to me that she thought would be helpful.  I decided to put them off until later.

We returned home from brunch and all decided to nap.  I couldn’t.  My brain started processing MISCARRIAGE MISCARRIAGE MISCARRIAGE again.  It wouldn’t stop.  My heart was breaking all over again right there in the bed where my DH & I have tried and hoped for three babies.  We were planning our upcoming homebirth just days before my last miscarriage.  We believed.  We trusted.  We were deceived.

I went upstairs to my computer to work on some outstanding projects.  Instead, I turned to the multiple miscarriage threads that my friend recommended.  I was quickly overwhelmed.  I am meeting with a different OB (one who spends 2 days a week seeing fertility patients) on Tuesday.  I am starting to panic.  There is so much that can contribute to recurrent miscarriage that is not easily found.  It’s also quite possible that no definite cause will be found.  Then what do I do.

I cried.  I cried more than I’ve hardly allowed myself in the past 6 weeks.  Tears were streaming but I was silent.  Don’t want to wake up my slumbering family.  And what might happen if I actually let loose?  I’m terrified to go there.

I stepped into a nastly little debate on-line today about whether or not women who have had cesareans have actually given birth.  It grieves me that women can be so mentally and emotionally damaged from their childbirth experiences, and while I am empathetic, I can’t relate.  Especially not on a day like today when I have been reminded over and over again that other people get pregnant and carry babies to term just fine.  No, cesarean surgery is NOT an optimal way – even when a life-saving mechanism – to have a baby.  But I’d take another cesarean over the madness and hell I’ve been in for the better part of a year.

I feel like I am starting to lose ground.  Perhaps this upcoming visit to the OB is stressing me out.  Perhaps my professionally-insane April is starting to weigh on me already.  Perhaps being behind on so many projects has more than caught up to me.  Perhaps I’m starting into a new phase of grieving.  Perhaps I’m afraid to get over these losses.  But one thing is for certain:  I am not who I want to be right now.

“Childish” Wisdom

The other day I was alone with my daughter and marveled over how “perfect” she is.  “I am so lucky to have you!” I proclaimed.  She replied, “but not lucky about our baby?”  I was shell-shocked.  How did she know to connect my thankfulness for having her with my regret in losing her siblings?  “Mommy, did our baby die in your tummy?”

Today I was telling her that we were about to go to her great grandfather’s funeral.  “Honey, our Dad-dad is in Heaven with God.  Dad-dad died.”  A few minutes later she asked, “Mommy, are you going to die?”  “Not for a long long time, sweetheart.”  And I kissed her forehead.  That seemed to satisfy her for the moment.

The wisdom of a three year old is awesome.