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A Little TMI

Most pregnancy-after-infertility bloggers write about their personal experience.  I saw this blog as something different, I wanted to offer more concrete information.  However, I’ve been going through something recently that takes me back to my infertility days, which I thought I’d share with those of you who know.  

I started blogging because I had a purpose.  Then I discovered I like writing and started my other blog just for fun.  Having one blog about pregnancy/infertility and one about roller derby, never in a million years did I think the twain would meet!  But here we are, 9 years after my first IVF cycle, feeling the same hurt and disappointment.

As a brief recap, at 46 I joined a roller derby league.  If you need to ponder or just laugh at my insanity, please take a minute.  Welcome back.  I’ve never been athletic.  I work out because I have to.  If I was thin, I’d probably never see the inside of a gym.  I played some recreational sports as an adult as a social activity.  However, if sitting on the field with a bunch of people then going out for drinks after was all that was left to the sport of softball, I’d be just as happy.  I started roller derby on a complete whim, with the attitude that I’d just give it a try and not take it too seriously.  By the time my first assessment came, to move from “fresh meat” to level I, I knew I was hooked.  My dedication to derby surprised no one more than me.  I started working out more, have been through physical therapy, and two cortisone shots in my hip!  Just like trying to have a baby, I started derby too late in life for it to be easy!  

 We all take comfort in small favors.  Mine is that I went through infertility before the rise of Facebook.  For those of you more recent warriors, I don’t know how you cope with the rogue announcements, ultrasound photos, play by play of labor room progress, posts from “my zygote is 3 weeks” apps, etc.  Last month I had another assessment to move from Level I to Level II.  There were two of us assessing at this particular level. I was checking Facebook incessantly for the results of my assessment, which were (wait for it….) failure!  My heart sank to a place immediately recognizable.  The intellectual knowledge that I tried my best, it’s not a personal failure, I can try again, etc., was there.  So was that feeling, deep in my gut, that no matter how hard I tried, my body failed me.  Sound familiar?  The icing on the cake was a post by my fellow assessee, proudly stating she made it.  Sound familiar again?  When I was infertile, I used to call them “slap in the face” moments.  Most of them were pregnancy announcements, although one from a women in the infertility section of Borders whose cavalier remark, “I’m not infertile, I’m just reading about sex selection because I don’t want another girl” sent me straight for a cry fest with Ben and Jerry.  

It’s interesting to think that 6 years after my final cycle, I can be taken back so quickly.  Disarming to know that something you thought was gone can be resurrected so easily and without warning.  If I hadn’t gone through infertility, would I still feel this much disappointment?  Probably.  Which made me realize, we often think that people who haven’t experienced infertility don’t know how we feel, but that’s not true.  Everyone has been let down, felt grief, worked really hard for something only to have it taken away.  I think infertility sets us apart because we went back to do it again and again for months or years.  Most lives are dotted with a lost job there, perhaps a failed marriage a decade later.  Most didn’t have a chunk of their adult lives occupied by repetitive cycles of trial and loss.  Infertility gives us a familiarity with failure and grief.  For example, everyone has had headaches.  There are various classifications of headaches:  tension, hypoglycemic, sinus, etc.   I’ve never had one, but I know people who suffer chronic and debilitating migraines.  I imagine that most of us have had a severe headache periodically, but infrequently enough that we don’t know what kind we’re having, we just take a painkiller and move on.  Migraine sufferers know in a minute how to define their pain.  I guess that’s what infertility is like for us, a pain for which most people need to search deep in the hard drive of their brains to label, while ours is saved to desktop.  

Last week I tried to assess to move up to Level II, again.  And I failed, again.  I’ve spent today, between the tears, wondering wether to give up.  Wondering if it’s worth it to put so much effort into something I’ll probably never get good at.  Wondering if I should focus on other goals in my life, like my family, career, writing.  (Check the date of my last post if you think my new hobby hasn’t taken away from writing time.)  Should I prioritize what’s important and focus on that one thing?  My problem is, I don’t want to do just one thing with my life.  And like infertility, my age puts a deadline on roller derby;  it’s kind of a now or never thing.  

While thinking about giving it up, I remember my miscarriages.  Both were both declared very early.  We got the first positive pregnancy test and were thrilled.  Then the second hormone level didn’t rise.  Neither did the third.  Then the numbers started doubling.  During the first miscarriage, I held out hope, which I guess in hindsight was denial.  I found some article that said women who have PCOS may not have normal hcg rises in pregnancy, and hung on for dear life.  As a midwife, I knew there was no way that the pregnancy could be viable, and yet I brought a video tape to my first ultrasound, hoping to get my first glimpse at a baby only to see an empty uterus.  The waiting for a definitive answer was more painful than the slowest of bandaids coming off.  The second miscarriage happened exactly the same way.  Except the night I got the result of the first hcg that didn’t rise, I came home and had a glass of wine.  I generally use food more than alcohol as a drug, but I just needed to have an definitive ending to that pregnancy, to not hold out a glimmer of hope.  I don’t feel guilty about drinking the wine, per se.  Luckily, I had genetic testing done on the remains after my D&E, so I know the embryo was non-viable, no matter what I did.  But there was a feeling of regret in having given up so soon.  Like I owed it to my potential baby to have faith.  My pregnancy that resulted in my son started with low numbers, but started rising appropriately.  Then at 5 weeks, I started bleeding.  This normally wouldn’t have made me too worried, because I know lots of women have some bleeding in pregnancy.  This wasn’t a little spotting;  I stood up and there was a  “splat” sound on the floor, so I was not optimistic.  But I remembered how I felt about the last pregnancy and I was determined to have hope for the sake of having hope alone.  I needed to feel like I didn’t give up, no matter what the outcome.  And as I continue to think about my decision about derby, I realize I don’t need to really make one.  I don’t need to choose to do derby for a year or 5 years, just the next practice.  It may turn out that I just don’t have this in me, and I’ll never play an actual bout.  But if that’s the outcome, the loss may be ameliorated by the fact that I knew I tried.  As hard as going to the next practice and facing the humiliation of being the only Level I left may be, the thought of never going again is worse.  

I realize how ridiculous it seems to be comparing a recreational sport with my miscarriages.  I hope it doesn’t sound insensitive to those of you for whom the memories are even fresher.  When I was going through infertility, if someone had told me they knew just how I felt because they didn’t pass their roller derby assessment, I’d have beat them about the face with their quad skates, then made a noose out of their fish-net stockings.  What’s even worse is this isn’t nearly the worst thing that’s happened to me in recent months, which includes events like losing my job and taking my son for an MRI to rule out cerebral palsy (he doesn’t have it, thankfully!). Dr. Phil might say I’m taking all my stress and focusing it on something that doesn’t matter as much as a coping mechanism.  I’m comparing my recent experience to infertility as a matter of like, not degree.  All the other stuff I went through just happened, through no fault of my own.  But roller derby, the cycle of hope and disappointment, of watching others achieve and feeling like it’s my turn, of feeling like a failure:  it just feels too familiar.  

When I started writing this post, I thought the theme was that the scars of infertility never leave you.  I never expected a moral to the story, but here it is:  the pain of infertility stays with you but so does the wisdom and strength.   Someday a challenge or loss will come into your life, major or minor.  It will feel familiar and unfair, because you’ve already fought the good fight.  But you will face it with grace and courage because you know the only way forward is forward.  Through the hope of “one more cycle”, I brought two of the most amazing people into the world;  this is just 8 wheels.  

Moving on: Choosing a Prenatal Care Provider.

You should choose a midwife.  Really, what did you think I was going to say?  Seriously, I obviously believe very strongly in what I do, but there are several options for prenatal care, providers, and birth sites, and you will choose what is right for you.  There are several good articles on choosing a provider, so I’ll refer you to those for the basics.  I’d like to add a few other notes from someone on the inside.  

The first thing you should do is discuss with your partner, and think about yourself, what would you like from your prenatal care and birth experience?  Actually thinking about this may be something you have avoided for quite some time. When you stop and think, you may realize that what you imagined when first planning a pregnancy is not what you want one or more years later.  Some women are so anxious after trying so hard to conceive, that doing something feels better than doing nothing and they want every test and bit of technology to feel secure.  Some women have the opposite reaction:  after so many procedures and medications, you may be up for a more natural approach than you saw for yourself originally.

Allow me to let you in on medicine’s dirty little secret:  it’s not as easy as it looks on TV.  There are general guidelines for care, but within those guidelines there are still options.  Midwives as a general rule favor less intervention and focus more on educating women to take care of themselves, easing anxiety, and encouraging women to listen to their bodies. That being said, I’ve worked with physicians who are less conservative than I am with intervention.  I’ve had many midwifery colleagues with a wide range of experience and comfort levels.  Before you choose a provider ask yourself:  Are you more comfortable doing something rather than nothing?  Would you prefer your provider make decisions about care, or would you rather be educated and make the decisions yourself?  Most providers know themselves where they fall on the spectrum of caution and should tell you if you ask.  

The following link contains other questions to consider asking your provider.  http://www.parentingweekly.com/pregnancy/delivery-options/choosing-an-ob-or-midwife.htm  The few women who ask me some of these questions always ask if I mind being questioned.  I can speak for most of my colleagues when I say, no!  I’m always surprised when women ask less questions of me than I did when interviewing wedding photographers!  One of the questions listed for midwives is to ask what obstetrician will back them up.  I think another question you should ask is, “How are complications managed?”  In other words, if you develop a complication during pregnancy, will you need to transfer care completely to the MD or will the midwife still care for you in co-management with the obstetrician?

I’d like to say a word about choosing a large or small group practice.  Possibly not knowing the doctor or midwife who will be with you in labor is a cause of angst for many women.  For better or worse, the days of a solo obstetrician who is on call 24/7 are gone.  There are some home birth midwives who deliver all their own patients, so if you would like highly personal care and natural child birth, this may be a good option for you.  Many groups have 3 or 4 obstetricians and/or midwives, and patients see all of them throughout the pregnancy.  Just remember, the larger the practice, the less time you have developing a relationship with any particular provider.  The other thing I like to share with women who see me is something a former colleague of mine said: “Everyone gets the midwife they need.”  This may be less true for obstetricians, but I know when I take care of women whom I’ve never met, we are old friends after about an hour!  It’s a very intimate time, and you usually develop a relationship very quickly.  I knew most of the midwives in the practice I went to because I worked with them.  In labor, I got the one midwife I’d never met.  It turned out, she also had been through IVF and was able to provide exactly the support I needed.

Most women will have traditional prenatal care, where you schedule appointments every few weeks and have about a 10-15 minute visit.  There is a new trend in medicine called shared medical appointments.  One particular type of shared prenatal care is called Centering Pregnancy.  http://centeringhealthcare.org/pages/centering-model/pregnancy-overview.php  In general, I highly recommend this style of prenatal care, because women get much more time for questions and information during the appointments, and the support from the other women in the group is invaluable.  There are several studies that show that women who have been through group prenatal care have lower anxiety levels, and lower incidence of some pregnancy complications.  However, if you’re still feeling like you don’t fit in with other pregnant women, group prenatal care may not be for you.  

Transferring to obstetric care may be difficult.  You’ve spent lots of time getting to know your RE and developing a relationship with a new provider at a time when you may already be feeling anxious and uncertain may be difficult.  In addition to the questions listed in the above article, you may want to ask your doctor or midwife if they have much experience with IVF pregnancies, and if there is an opportunity to schedule longer appointment times if you think you need them.  

For further resources:

http://americanpregnancy.org/planningandpreparing/choosingob.html

http://ourmomentoftruth.midwife.org/ACNM/files/ccLibraryFiles/Filename/000000003184/NormalBirth_ConsumerDoc%20FINAL.pdf  

Passing the test.

So, it's been awhile.  It turns out I don't always have time for my blog in addition to being a full time mom and full time midwife.  I thought I'd cover a topic today that doesn't specifically have to do with pregnancy after infertility, but when I scan the boards I often see it as a source of angst, which is genetic screening.  I find most of the explanations out there lacking, so let me give you mine.  

Most women are offered screening for what's called aneuploidy, or specific diseases caused by an abnormal number of chromosomes.  The most common of these is Down's Syndrome, or Trisomy 21.  The tests also screen for trisomies 18 and 13, which are less common but usually life threatening.  A screening test won't tell you if the baby has a certain condition or not, it just calculates a statistical risk based on your age and a number of other factors.  If you learn nothing else, this is what I want most women to understand, which hardly anyone tells you: what is called high risk or not is somewhat arbitrary.  The first of these tests to come along was a blood test done in the second trimester called an AFP or alfa-fetal protein test.  Other hormones have been added to this test, which has evolved into what's called a quad screen.  When the test first came out, there was a cut off number of what they would call high risk, and it was based on the risk of having an amniocentesis, which at the time was thought to be about a 1 in 200 chance of miscarriage.  More recent tests have been given a number based on what the cut off should be to be able to diagnose the maximum number of babies without adding too many extra tests to normal pregnancies.  I agree with something I heard a maternal fetal medicine doctor say once:  that there probably shouldn't be a cut off or a label of what's normal or not, women should be given their risk and decide based on their own comfort level.  For example, a risk of 1 in 150 would be considered abnormal on a quad screen, but less than 1% chance of having a baby with Down's syndrome may be perfectly acceptable to some couples.  A risk of 1 in 250 would be considered normal, but may seem high to a mother with 5 kid,s 2 of whom have special needs.  

So after the AFP or quad screen came the early risk assessment, which is a combination of an ultrasound between 11.5 and 13.5 weeks gestation and a blood test.  The ultrasound measures the baby's nuchal translucency, or the thickness of the neck, and his nasal bone, both of which have a statistical relationship with chromosomal abnormalities.  The advantage of this test is it is a little more accurate than the quad screen, and you get your results earlier.  Then, in the past few years, we started offering patients something called the serial sequential screen, or integrated screen, which is a fancy word meaning a combination of the two older tests.  The benefit if this test is it is the most accurate way of screening;  however, not all insurances are covering this test, at least in my area.  

So, if you have a screening test that shows a higher risk of Down's syndrome, what are your options?  The first option not many people talk about is to do nothing.  If your screen result comes back with a risk of 1 in 50, you may be OK with a risk of 2%.  If you would like a diagnosis, the gold standard is to do an invasive test.  The most common is an amniocentesis, which is when fluid is removed from around the baby and tested for DNA.  The results are as close to 100% accurate as you can get.  Most women have heard that there is a risk of miscarriage from this exam.  For years, we told women the risk was 1/200, now we are quoting 1/300 to 1/500, although there is speculation that it is even lower.  The change is two-fold:  first, ultrasounds have gotten much better, which makes it easier to insert the needle safely.  The second reason is when the risk of amnio was first quoted, no one ever compared it to women without amnio who had miscarriages, and often it is women who are higher risk who are getting the test to begin with.  The other invasive test is called a Chorionic Villi Sampling (CVS).  It involves removing a small amount of tissue from the placenta.  The advantage is it can be done earlier in pregnancy, between 10 and 12 weeks.  However, there is a slightly higher risk of miscarriage compared to an amniocentesis, about 1 in 150.  

There is a new test called cell free DNA.  There are many companies offering this test, you would have to inquire with your provider as to which test they offer.  The basics of the test is that there is a small amount of fetal DNA in the maternal blood, so DNA testing can be done by drawing the mother's blood.  The advantage is it is non-invasive, and carries no real risk, like the amniocentesis or CVS.  However, although it is 99% accurate, it is not as close to 100% like the more invasive tests.  Also, most insurances don't cover it.  The price can be anywhere from $200 to over $1000.  My advice is that if you are interested in having this test, call the company directly and try to negotiate a lower price.  

So, why might you want to have a screening test?  The basic question you need to ask yourself is, is this information you would want to know before the baby comes?  I think there is a perception that the only reason someone would want to be screened is if they would terminate the pregnancy.  I have found that not to be the case.  Many women feel better having the diagnosis prior to their baby's birth, having had time to educate themselves and prepare.  That being said, if you have an elevated risk on a screening test and choose not to have a more definitive test, would you feel better knowing there is a greater possibility and preparing yourself, or would that information just cause more stress?  I actually viewed prenatal screening in the opposite way.  I was 39 and 41 when I had my children and I already knew I was higher risk.  I had the screening tests and thought, if it shows I'm low risk, I can be a little more reassured.  If it shows I'm higher risk, I'm really no worse off than before.  (I will talk specifically about older moms in another post -  I think it's a topic which deserves it's own chapter.)  

For some, especially those who have had a friend of family member with Down's syndrome or similar disorder, a decision about how you would handle the diagnosis may have come long before you were pregnant.  For some, however, the first time you may be considering this is when the test is offered.  How to be screened and what to do with the information is a very personal decision.  The only thing I might add, is that there may be assumptions from providers, family, or even yourself that your decision should somehow be different because you conceived after a struggle with infertility.  Your journey up to this point will certainly color all future decisions, but it is one of many factors in how you determine the right course for you and your family from here on in.  

I welcome any questions in the comment section, and have listed websites below for further information.

Resources:

http://www.acog.org/~/media/For%20Patients/faq165.pdf?dmc=1&ts=20130707T1632232672

http://www.marchofdimes.com/news/the-leading-edge-of-medical-innovation-new-prenatal-genetic-tests-use-moms-blood-to-learn-about-her-baby.aspx

A Letter to my Sisters

If you are a pregnant woman reading my blog, I hope you will allow me this diversion for one post.  I just returned from the American College of Nurse Midwives annual convention in Nashville, TN, the first time I'd been to one of our conventions in about 10 years.  I feel invigorated and proud to be included in this legion.  I loved sharing with you and learning from all of you.  

I especially want to thank all of you who came to view my poster, "Pregnancy after Infertility".  It means so much to me to share something with all of you that I feel so passionate about.  I hope some of you I connected with are now visiting my blog, and I have a few more thoughts I'd like to share.  First, at one of the publishers' booths, I had the opportunity to flip through Varney's 4^th edition.  I noticed that infertility is mentioned briefly under advanced maternal age, PCOS, and a few other entities, but there is no discreet section dedicated to infertility.  Infertility affects 10% of all women, and 1% of the babies we assist in birthing are a result of ART.  I know there may be contributors to Varney reading, and I hope you will take this statement how it is intended, which is not in the spirit of criticism or disrespect, but as a vision for moving forward.  

I'd like to acknowledge another poster presentation I viewed:  "Conception and Pregnancy experiences of Male and Gender Variant Gestational Parents" by Simon Ellis, Danuta Wojnar, and Maria Pettinato.  What does this presentation have to do with infertility?  Perhaps nothing, except for this challenge I put forth to all of us:  Let us as midwives be on the forefront of talking about all issues which affect our clients, not just the topics that are the most popular or the most visible.  

Now, as I adjust to the sound of my son playing Mancala instead of music from a country music band, I have a one more reflection from my time in Nashville.

TOP 5 REASONS I LOVE BEING A MIDWIFE.

5.  Sitting in a lecture between an 80 year old retiree, and a nursing 2 month old.

4.  While professionals from other trade shows may come home with pens and hats, my SWAG consist of a toy sperm and personal lubricant. 

3.  That no matter how I dress, groom, or wear make up, there will be someone else who looks just the same, and those who don't accept me exactly the way I am. 

2.  Our mid-husbands:  all the strong and compassionate men who are our husbands, lovers, friends, fellow midwives, and kindred spirits, like Dr. David Grimes.  If you missed his lecture, please try to find the recording from ACNM.

1.  Being keeper of the knowledge that, while pizza and fed-ex packages may be delivered, babies are birthed, and the power that knowledge contains. 

Until Denver, ladies….Can I get a Yee Hah!!!

What would Nashville be without boot shopping!

A few stomping grounds.

My poster session - the most difficult part was lining up the papers!

Me, on day 2.

And the other #1 reason I love being a midwife - I mean come on, are we fabulous or what!!!