Thursday, May 13, 2010

Ten Days of Joy

Well, it has happened again.  Miscarriage number three.  Only one baby in five pregnancies.  Shit.

At the time I wrote about number two, about a month ago, I was already pregnant and didn't know it.  Adam and I had been under doctor's orders not to try to conceive again until we got some answers on what might be the problem, but we figured that we'd start using protection after my first cycle.  Ooops, we never got that far!  I must say, it's quite exciting to get pregnant without really trying.  No ovulation predictor kits or loose underwear or basal body temperatures - it seemed miraculous!  And maybe because of the surprise and new experience, I somehow convinced myself that this was the one - this one was different.  I was sure of it.

To add to my certainty, we had an ultrasound and saw a heartbeat at 7 weeks.  Everything looked perfect.  The fertility doctor told us to come back in a week for one more ultrasound, just to be sure, before she would refer us to a regular ob-gyn.  So at 8 weeks, once again, we found out there was no heartbeat.  After my pregnancy in the fall when I went to the 8 week ultrasound alone only to get the bad news with no support, I decided I would never have an ultrasound again without Adam present.  I'm glad for that, because I was devastated this time.  Although it was still nowhere near as bad as my first pregnancy experience, it was the worst shock of these recent three.

I still didn't completely believe it until we got a second ultrasound that day.  And even then, I had moments of disbelief.  I mean, mistakes are made sometimes, right?  But I've since had a third ultrasound with the same results.  I'm now waiting for the inevitable passing.  I decided not to get another D&C because, although it would provide certainty and possibly more information about what went wrong, the procedure was more traumatic, mentally and physically, than I had anticipated when I decided to go that route the first time.  It also requires Adam and I to be totally useless for at least two days, if not three.  And I passed the second miscarriage naturally with no pain or fuss (I didn't know ahead of time with that one) so I'm less frightened of what will happen.  Still, the waiting is very difficult.

After number two, when she instructed us to use protection for the time being, the fertility doctor explained, "because the last thing you want is to have another miscarriage."  Well, she was wrong.  I'm actually glad it happened this way - or maybe I should just say that I have no regrets.  We had another shot at a baby.  We lost, but we had a shot.

Barring any evidence of a treatable condition, both Adam and I see this as a numbers game.  There are still avenues to pursue in diagnosing our troubles, but we've covered all the common things.  There are only two things that look suspicious at this point: the MTHFR issue, which is now being treated (but wasn't in time for this pregnancy), and some kind of genetic defect in one of us.  If the problem is the former - we're covered.  If it's the latter, well, we know we can produce a healthy child because we have one, so it's logical to assume we just need to get lucky.  That doesn't mean that there is nothing more we can do.  What we are trying to find out (and I haven't been able to pry this information out of the doctor yet) is whether, if it is a recognizable genetic issue, what the treatment options would be.  I only know of one, which is IVF and then genetic testing of the embryo before implantation (which is just a numbers game minus the miscarriages).  We've already decided that we won't do that.  It's too expensive, too stressful, and the success rate is too low.  So why bother with further testing if we would take no action on it?  I've tried to address this with my doctor twice, and she has intimidated me out of pressing for an answer both times.  (I really need to work on my assertiveness skills.)  Adam is going to call her next to see what he can find out, and if that doesn't work, it's "Hello, Internet."

Right now, Adam and I agree that we will disregard the doctor's instructions and keep trying immediately, even if we continue on to genetic counseling and whatever might follow that.  It's amazing to me that the doctor refuses to discuss this issue with us to understand our values and priorities.  (She had the same attitude towards the D&C issue - she recommended that I wait, but as soon as I started asking questions she got defensive and said, "Fine, then have the D&C," but would not directly answer my questions.)

Anyway, the worst of it is over.  I only knew I was pregnant for ten days, but they were ten days of joy and it may sound silly, but nothing can take that away.  We got pregnant again, and that's something.  So many people can't get that far, and having a child already makes a big difference in how I feel about it.  Sure, I suffered terribly for the loss, but it is a temporary thing.  In fact, this one was particularly difficult, but one week later, I'm practically recovered and ready to move on.  To paraphrase Ayn Rand, my focus is not on avoiding pain, but on achieving life.  I don't mean the life of the baby we hope to have, but my own life and my own values.  This does not mean that I will do anything to have a baby - our position on IVF makes that clear.  It doesn't mean that I evade the fact that we might fail.  I am perfectly aware of that.  It doesn't mean that the pain of miscarriage is repressed or even irrelevant.  I fully experienced the pain.  I barely got out of bed for five days.  On Monday, at my lowest point, I started to wonder when and if this repeated trauma would do permanent damage to my psyche.  But by the next day, that feeling had disappeared and I have felt better each day since.  I think these experiences are showing me the real meaning of a pain that "only goes down to a certain point." (Ayn Rand, again.)  I can't say that I have that level of self-esteem in all areas of my life, but I have it here, and it gives me more confidence in all those other areas.  I know that I can and will act to achieve my values.

But I will never again look forward to an ultrasound.

9 comments:

  1. Dear Amy,
    That was beautifully written and an inspiring testimony to your personal strength. I am so sorry for your loss.
    Rachel

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  2. Amy,

    Is it possible for you to find another reproductive endocrinologist to work with? I would, if it's at all feasible for you timing- and insurance-wise. I'm sure you have considered this, but your issues with your doctor sound more to me like a fundamental incompatibility between your communication style and the doctor's than a failure on your part to be assertive enough. When dealing with such a sensitive and emotional issue, you deserve a doctor that sees eye to eye with you and that above all you can trust.

    I am truly sorry to hear that you have had another loss, but equally inspired by your perseverance and hopeful that it will pay off for you with a successful pregnancy very soon.

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  3. Tori,

    In my experience, 95% of doctors are this way, so why bother? I don't have time to interview more doctors. I've already had 18 doctor visits (which includes interviews) this year. That's an average of exactly one per week. And I've seen, count 'em, ten different doctors/midwives in that time.

    One of my first reactions to the miscarriage was the horrifying realization that this meant more doctors. No, unless I think she's incompetent, I'll stick with her or just give up.

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  4. Tori, I apologize for my angry tone in the last comment. I didn't mean to take it out on you. I'm just so frustrated with doctors that it drives me nuts.

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  5. So sorry! Wonderful post. I love reading your example of introspection and conscious choices.

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  6. Amy, thanks, but I didn't take offense; I can't imagine how frustrated you must be. I would be equally frustrated, if not more so, and I am so sorry that the difficulties you are experiencing with your medical care are compounding an already trying situation.

    I just wanted to point out that I don't think you should blame yourself--even in the slightest--for a lack of assertiveness skills when it's pretty clear that the problem here is that your doctor is acting like an ass.

    As always, I appreciate your sharing your journey here and hope you'll continue to do so... assy doctors and all. :)

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  7. Amy,

    I'm sorry to hear about the loss.

    My wife and I have had two babies and think our doctor is one of the most incredible people we know. I can certainly assure you that you wouldn't have these sorts of problems. Thankfully we haven't had problems conceiving or bringing babies to term, but he is a specialist in helping people who do have such problems. I don't know where you are located, but if a Southern California / Pasadena doctor would work for you and you'd like a recommendation, please get in touch.

    And in any event, sympathy and best wishes.

    Cheers,
    Jeff

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  8. Update: After Tori's comments and a few others regarding my reproductive endocrinologist, I have changed my mind and am indeed going to seek out a new one. I didn't even mention here that my current doctor made a mistake with a prescription that could have caused me harm (I caught her error) and that she gave me almost none of the information on the MTHFR gene - everything I wrote about that I learned from the Internet. (She didn't even tell me that the condition had ramifications on my health outside of pregnancy! All she said was, "You have a mutation on the MTHFR gene but all it means is you have to take Folic acid for the rest of your life." That was the extent of the dicussion.)

    I didn't even think about that because I am so accustomed to useless doctors so it just seems like they way it has to be. Finding a new doctor will be a hassle, but it will probably only add one extra appointment to the mix, and that's nothing in the grand scheme of things.

    I am also no longer opposed to IVF with genetic testing. My doctor has not talked to me about any treatment options at all, so I had been going on my prior knowledge. Yesterday, I found some information that helped me understand that the success rates are low in general, but in our situation they would probably be much greater (since we don't have trouble conceiving). This changes my entire opinion about IVF, and it just goes to show you how absolutely useless my current doctor is.

    I chose this doctor because a friend used the same practice, but she had a different doctor, and I didn't have any other referrals. Now I am actively seeking out referrals.

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  9. I'm glad to hear that! I'm rotating through all of the OBs at my practice these days, since any of them may be on call when I go into labor, and seeing other doctors--even in the same practice--reminds me of how much I love my OB. The last one I saw just absolutely did not have the same open, honest, and willing to chat bedside manner as my regular doctor, and I definitely left the appointment with a bad taste in my mouth because of it. It can make all the difference in the world.

    I hope you are able to find a referral for a doctor whose style is a closer fit for your needs and personality!

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