Ask Dr. Marc: Fetal CHAOS

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Dear Dr. Marc,

Last year I had two pregnancies. The first was a missed miscarriage at 8 weeks and the second pregnancy we terminated at 20 weeks due to a rare condition called fetal CHAOS. My husband and I desperately want a child. Since out tx we have been trying to conceive. This upcoming cycle will be cycle number 6 for us. I just don’t understand why we are not getting pregnant. With both of my previous pregnancies I got pregnant on the first try. I am now thinking about asking for clomid and an iui. Do you think that at this point that is a good idea? I am almost 36 years old. How many cycles should I wait before doing this?

Thanks so much!
A

 

Hi A,

It sounds like you have been through quite a lot in the last year.  Between suffering through a miscarriage, then being diagnosed with an incredibly rare syndrome like fetal CHAOS, I can understand your frustration.

The good news is that I believe you have an excellent chance to have a healthy baby!  I also believe that it is time to start taking some active steps towards that goal.

First, the fact that you became pregnant 2 times last year bodes well for your future.  This means that the sperm and egg are coming together and implanting in your uterus.  Without these steps pregnancy is impossible.  However, the fact that you haven’t conceived in the last 6 months might mean that something has changed with your husband’s sperm or with you eggs.  It is worthwhile obtaining some preliminary ovarian reserve testing like an AMH level, or an FSH and Estrogen.  Your general OB/GYN should be able to order these for you.  It is important that the FSH and Estrogen are taken on the 2nd or 3rd day of your period, AMH can be tested anytime. You general doctor should also be able to order a semen analysis on your husband to be sure that his swimmers are okay.

Another test that is worthwhile is an HSG (Hysterosalpingogram). This test is best known as way to assess the fallopian tubes, but it also gives information about the lining of the uterus.  After two losses, we want to be sure that there is no scar tissue in your uterus.

Further, it might be worthwhile to evaluate you for factors that could increase the risk of another loss.  Not all experts would agree that you need an evaluation for recurrent pregnancy loss, but I personally believe that some preliminary testing is worthwhile.  This is especially true if there were any genetic abnormalities like translocations discovered in your most recent loss.

While this testing is going on, I would recommend that you continue timed intercourse. Once everything is done, if the results are normal, I would definitely move to Clomid IUI.

Best of luck

Dr. Marc

 

 

 

Four Candles

As many of you already know, today is Pregnancy and Infant Loss Remembrance Day.  It’s a difficult day for many of us. Although a day of remembrance comforts us, it also reminds us of the losses we’ve suffered along the way.

My sweet friend Jessica, whose loss is far greater than all of mine combined (and yet she listens to me anyway), organized a special event yesterday.  Lanterns were released in memory of little lost angels.  I spoke to her as she drove to the event.  The weather was touch and go.  It was sunny at times, but the clouds were rolling in.  She worried that the lanterns wouldn’t light, or that rain would stop the event from happening.

It didn’t.

And a little while after our phone call I received a tweet with a picture of the lantern she released in memory or my little boy…the one who made it 17.5 weeks.  The last little one who would have made three.

Tears streamed down my face as I stared at the picture for a while.  There goes a little part of my heart.  A little part that I hold tight…hoping to find peace with it one day.  I think of him almost every day.  He would be turning one next week…a fact that wakes me during the night and ignites silent tears under the duvet while my family sleeps peacefully throughout the night.

Tonight at 7pm all across the nation, people who have lost a pregnancy or an infant will light a candle in memory of that sweet little angel.  For at least one hour, those candles will burn to remember the little souls that didn’t make it.

Tonight I will light four.  Although that last loss stays with me day after day, the other three miscarriages will always be a part of me too.

We never fully move on, we simply start to move forward.

So tonight I will light four.  I will remember those pregnancies and the little heartbeats that I saw on the screen week after week.  13 weeks.  11 weeks.  7.5 weeks.  And 17.5 weeks.  I will remember each one of them.  I will pray that those little lost souls found their way to heaven where they can be comforted by my father and rocked by my Nana.

And I will probably cry just a little bit more.

Because even when you think you’re done…you’re never truly done.  The memories stay with us, even when we try to bury them deep within our souls.  Time heals all wounds, but some leave significant scars.

Sending good thoughts to all of you as we remember our losses and take another small step forward.

When a Friend Miscarries…

Miscarriage is devastating.

 

It’s painful (physically and emotionally), confusing, and heartbreaking.  It leaves a couple feeling lost, sad, and broken.

 

And then there are the hormones.  Pregnancy hormones tend to surge quickly, and they crash just as fast when the pregnancy ends.  Many women experience symptoms of depression and anxiety following a miscarriage, and those crashing hormones certainly don’t help.

 

Many miscarriages come with warnings:  Bleeding, cramping (sometimes even contractions), and a sudden decrease in pregnancy symptoms are all warning signs that can occur.  But some miscarriages are classified as missed miscarriages…this kind of miscarriage occurs without a woman knowing it.

 

The truth is that none of that really matters.  The truth is that miscarriage is devastating no matter when it happens, how many symptoms preceded it, and whether or not it occurs during primary or secondary infertility.

 

Miscarriage stays with you.  No matter how many months and years pass, no matter how many babies make it to term, no matter how much social support surrounds you…miscarriage stays with you.

 

It can be very difficult to be on the sidelines when a friend or family member suffers a miscarriage.  It’s hard to know what to say, how much space to allow, or what how to act.

 

In some cases, friends and family members simply step aside because they’re not sure what to do.  This can lead to feelings of loneliness for the person who recently miscarried…even though the intention was most likely to give that person some time to regroup.

 

There are a few things you can do to help a friend or family member who recently experienced a miscarriage:

 

Listen:  The single best thing that you can do for your friend is to listen.  Resist the urge to focus on the positive and just let your friend vent and cry as much as necessary.  Grief following a miscarriage can involve anger, sadness, and depression.  Allow your friend to move through her grief at her own pace.

 

Bring dinner:  Your friend might not be able to ask for help or company, as recovering from a miscarriage is overwhelming at best, but she will most likely appreciate a dinner delivery and the chance to talk.

 

Make it a movie night:  Chances are your friend is wearing a daily uniform of yoga pants and an old sweatshirt right now…put on your cozy clothes and come prepared for a RomCom marathon.

 

Help out:  When you’re that overwhelmed, keeping up with the grocery shopping, laundry folding, and dishes doesn’t always happen.  Offer to help.  Your friend might decline the offer…but it’s always nice to offer.

 

Take a walk:  Chances are your friend has been cooped up and hiding out.  When she’s feeling a little better physically, offer to have a weekly walk with her so that you guys can just get out and chat.  End it with a coffee or smoothie to keep the quality time going.

 

Share books:  Reading is the great escape.  Drop off your favorite books when you’re done with them to provide a little extra escape for your friend.  Added bonus:  Instant non-miscarriage related conversation during those walking dates.

 

Be yourself:  You don’t have to tip toe around your friend just because she’s going through something terrible.  In fact, she’s counting on you to just be you so that she can have some feeling of “normal” after such a terrible loss.

 

Avoid personalizing:  Even if you follow all of these tips, your friend might still hide out and ignore the phone.  She might even lash out once or twice.  Try not to take it personally.  Coping with miscarriage feels impossible in the beginning and we all make mistakes along the way.  Try to recognize that your friend is overwhelmed, devastated, and exhausted.  Give her time and just continue to offer to be there when she’s ready.

 

Pour the Cabernet:  Always remember the wine.  Enough said.  (If it’s really hot…bring white.)

 

If you’re here, you are already an amazing friend.  Clearly you care enough to find the best possible ways to help your friend cope.  Keep on doing what you’re doing and you will certainly help your friend get through this very difficult time.

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Left Behind

Early on, I promised myself that I wouldn’t let it change me.  There are no guarantees that life will be easy, after all.  Sometimes struggle is just part of the deal.

 

And for a little while, I even believed it.  I took the blows as best I could and then picked myself up and started again.  I would prevail; I just knew it.  Together, my husband and I could conquer anything.

 

I put my energy into feigning some version of normal.  I met up with friends for coffee, dinner, and movies.  I talked on the phone, wrote long and detailed emails, and remembered every birthday.

 

I tried.  I wanted to ensure that everything would remain the same.

 

But I was suffering in silence.  Sure, a few very close friends knew about the miscarriages, but I was reluctant to burden them with my constant thoughts and fears.  I talked about it when they asked but, for the most part, I remained quiet.

 

I did the asking.  And when they began to have first, second, and third babies, I asked about the babies.  I bought gifts, oohed at the appropriate moments, and held those babies close.  I snuggled them close as if they were my own.

 

I soaked it up.

 

It was a cool, December afternoon when I paid a visit to the newest baby born to someone in my friendship circle.  The sun cast a warm glow through the crack in the chestnut colored blinds.  I sat, huddled into the far corner of the oversized white sofa, snuggling her baby girl tight.  With wide eyes and an open mouth, she considered me with curiosity.  After struggling to free her tiny pink hand from the swaddle, her arm shot up toward my hand, as if she wanted to make contact.

 

While my friend regaled me with stories of her birth, I sat quietly and stared at her little girl.  It would be impossible not to smile in the face of such beauty, miracle, and little.  With a tight grip reserved for fire fighters and new babies, she clamped her warm hand around my little finger and held on for dear life.

 

I was in awe of her, as I was with every new baby that entered my life.  I could have held her for hours.  When she began to fuss, I walked her around the house to give her mommy just a little more time.  And then I left them to bond and find their way together.

 

I took a deep cleansing breath as I stepped out into the sunlight; new babies are good for the soul.  The colors seemed just a bit brighter as I scanned the landscape along the walkway and back to my car.

 

It wasn’t until I got into the car and bucked my seatbelt that my emotions caught up with me.  One moment I was aglow with love and the scent of a new baby, I could still feel the weight of her in my arms.  The next I was a sobbing mess.

 

I sat there for what seemed like hours, crying into my steering wheel.  Wishing, wanting, and being left behind yet again left me feeling lost and alone, no matter how hard my friends tried.  I cried for my losses, I cried for my shattered dreams, and I cried for the friendships I wasn’t sure I would be able to maintain.

 

With mascara stained cheeks, I finally found the strength to drive away.  I made my way home in a daze, not thinking or feeling, just driving.

 

It was then I realized that I had changed.  My friends were moving forward with their loves, expanding their families and starting new adventures.  But I was stuck in limbo, left behind and full of frustration, anxiety, and great sadness.  I was unable to connect because the aftermath was too emotionally taxing.

 

I stayed in touch as much as I could, and attended outings when I felt strong enough to socialize.  But, for a long time, I often chose to isolate.  I read hundreds of books, watched the same movies ten times over, and exercised my feelings away.  I waited for my time to come.

 

Despite my best efforts to the contrary, infertility changed me.  It left me hollow, anxious, and alone.

 

It left me feeling…

 

Left behind.

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Empty

I was bleary eyed, exhausted, and hysterical when I walked into the office that morning.  It was a cool but sunny January morning.  Truly, I had no idea what I was walking into.

 

Just two days before, I was told that my pregnancy had ended.  I was 13 weeks pregnant, and ready to tell the world.  It didn’t occur to me, not even for one second, that I would be telling a much different story.

 

Or hanging my head in shame and self-doubt, and avoiding the world for a while.

 

I gripped onto my husband’s arm and spoke in whispers that morning.  Words seemed nearly impossible to form as I struggled to make sense of what happened.  What is it something I had eaten?  Did I exercise too much?  Not enough?  How did I get there?

 

An unfamiliar doctor entered the room.  In a cold demeanor she outlined the procedure without making eye contact.  She was clinical, short on words, and ready to get it over with.

 

When she left the room for a moment, I sobbed to my husband.  My baby deserved better.  I wanted my real doctor; I couldn’t handle this substitute.

 

Within minutes she returned to administer the Valium.  I slipped into a drug-induced state of partial alertness, aware of sounds and sights but not feeling much of anything.  I stared helplessly into my husband’s eyes as I willed the moment to pass.

 

The low hum of the machine echoed through my soul as it sucked the lost life from my womb.  Would I ever be able to escape that sound?  Would it remain with me for years to come?

 

And then…it was over.

 

Time seemed to slow down as I limped my way back to the car.  Although the Valium had yet to completely wear off, my senses were heightened.  Conversations between strangers in the elevator sounded far too loud.  The sun beaming through the catwalk windows threatened to blind me.  The scent of the musty parking garage turned my stomach.  I was powerless to escape any of it.

 

And then…I was left to heal.

 

For days I existed on tea and toast as I watched the world go by from the safety of my home.  I begged the phone to stop ringing, slept in minutes, and cried often.  My body healed slowly, growing a little bit stronger each day.

 

Eventually, I rejoined the world.

 

I dressed with care that first day back to work.  Black on black with just a pop of color from under my sweater.  I wanted to hide any evidence of the loss that seemed to follow me everywhere I went.  With careful precision I applied eyeliner, eye shadow, and mascara.  Would makeup hide the pain that enveloped my soul?

 

I slipped into my office and collapsed onto the couch intended for my clients, a ghost of my former self.  I scanned my desk for paperwork and stared down the blinking phone.  The voicemail would have to wait for another day.  For a day when other people’s problems seemed more pressing.  Would that day ever come?

 

I trudged through that day, allowing busywork to free my mind from self-defeat for a while.  When the sun began to set and the familiar voices of co-workers faded away for the day, I made my way back to my car.

 

I drove home in silence, watching the scenery pass me by.  As I pulled into my brick lined driveway and looked up at the darkened house, it finally hit me.  It wasn’t sadness, anger, or helplessness that I felt each moment of the day.  It wasn’t longing, guilt, or desperation.

 

I felt empty.  Like the dark house with closed shutters that stood before me, not a light on to indicate signs of life, laughter, or family and full of things that couldn’t be seen from the outside.

 

Empty.

 

I just felt empty.

 

 

 

 

 

Lost and Found

My friend Lane, from Club MomMe, asked me to stop by today and talk a little bit about why I started this site.  Lane is no stranger to infertility either, and she has even shared her story here.

Here’s a little to get you started…

In the very beginning, I didn’t feel so very alone.  Don’t get me wrong, I wasn’t screaming, “I’m infertile!” from every rooftop, but I didn’t feel like an outcast either.

Truth be told, I didn’t use the word “infertile” for quite some time.  Doctors, books, websites, and family members were fond of reminding me that one miscarriage didn’t mean I was headed toward infertility.  It simply meant that I was unlucky.  I was in the 25%…even if a miscarriage at 13 weeks isn’t actually all that common.

A dear friend of mine experienced two miscarriages before her first child was born, so I knew that I wasn’t alone.  I confided in her, and a couple of other friends, when I needed some consoling.

For a while, it just felt like something I had to get through.  I was sure that once I was able to get pregnant again, the miscarriage would just be a thing of the past.

But then the second miscarriage happened.  Once again, it took me by surprise.  There wasn’t a cramp in my uterus or a spot of blood to be found that might have indicated that things were not actually “progressing on schedule”.  11 ½ weeks.  I was stunned.

Even then, I didn’t call it what it was.  Because one is bad luck, and a second is super bad luck…but you really need a third to earn that title “repeated miscarriages”.

Unless you go months and months and months with no pregnancy.

Then you’re both unlucky and infertile.  Particularly if your eggs are old (read: anything over 30).

One year passed.  The months dragged on.  The anxiety mounted.  Hope quickly dissolved.  It was exhausting.

And then the phone calls came:  Back to back, two of my closest friends announced their second pregnancies.  I was pregnant when they were pregnant with their first children…they just didn’t know it at the time.  We were supposed to do this together.

I struggled to make sense of it.  I didn’t know how to respond.  I was happy for them.  In fact, I was over the moon.  But I was also anxious, jealous, and depressed.  How could they possibly be going on number two when I couldn’t, for the life of me, have a number one?

That’s when the isolation set in.  Even though my friends checked in regularly and hoped against hope that I would get there soon, something felt different.

Life changes when you have one and are expecting another.  Your world shifts.

Suddenly, I felt very alone…

Please stop by Club MomMe to continue reading this post.

Letting Go

Most days I choose to see the possibilities.  The room that could be anything.  The furniture longing to be purchased.  The perfect space for friends, grandparents, and, someday, sleepovers.

But some days, when I’m truly being honest with myself, I see the empty space.  The hole meant to be filled by one last little one.

Some days I stare longingly at the perfect spot to place the crib, just to left of the window, where the morning light filters through the soft white plantation shutters.

Some days I rock quietly in the glider, the one that I could never quite convince myself to give away.  Just.  In. Case.  Other days I catch a glimpse of it, frozen in time, and wonder just what to do.

By day, I enjoy each moment.  I lose myself in play, reading aloud, and endless art projects.  I listen to each word carefully, burning their little voices across my memory.  I watch with pride and fascination while taking screen shots in my mind, every chance I get.  I hang on tight as I watch them grow and change right before my very eyes.

Time escapes me, no matter how hard I try to hit the brakes.

By day, I build memories.

By day, I am reminded that my family is perfect just the way it is.

But when darkness falls, my broken heart emerges once again.

By night, I am flooded with emotions.

Images of the final loss threaten to crowd out the happiness I find within the day.  Memories of the event leave me shaken to my core:  The look of desperation on my husband’s face.

This can’t be happening…

The whispers of the nurses as they ushered me into emergency surgery.

We will pray for you…

The signing and more signing of last minute waivers.

You mean I might die in there?

The final goodbye.

Just.  In.  Case.

Some nights I lie awake, clutching my empty womb, while muffled sobs escape my aching soul.

Some nights, the empty space feels bigger than others.  Some nights, it overwhelms me.

I am the lucky one, I tell myself.  I am the one with two amazing children and a husband who loves me beyond compare.

I am strong, resilient, and always a fighter.

And yet, at times, the sadness creeps in.  The what-ifs cause my heart to race while the you-should-haves force the tears to escape.

Sometimes the letting go is the hardest part.

Dreams change.  Life moves forward.  But emotions stay with us for as long as we allow.

So, for right now, that rocking chair is staying put.

Because sometimes you just need to dream…

Note: This post originally appeared on my other site, Practical Parenting, on March 8, 2012.

Everything’s Not Lost

“I’m not afraid of anything in this world.  There’s nothing you can throw at me, that I haven’t already heard” –Bono, U2

We were young and naïve (make that ill-informed) when we decided to start “trying”.  I was 29 years young.  Old by mother’s standards, but right on target with my friends.  All around me people were having babies.  One by one my girlfriends announced their exciting news.  It was time for us to give it a try.  Who knew the word “try” would take on a whole new meaning?

My husband was sure that getting pregnant would be a breeze.  To some degree, he was right.  Three months into the process I saw those coveted double lines on the stick.  We hugged and cried and danced around like maniacs.  We were on the road to starting our family.

12 weeks later our dreams were crushed.  We walked into the ultrasound happy and confident.  We were ready to share our news with our friends.  We walked out with our heads hung low, a steady stream of tears pouring from my eyes.  No heartbeat.  The baby was gone.  We were sure he was a boy.

My doctor held my hand and told me what no one tells you until it happens to you:  25% of first pregnancies end in miscarriage.  We could try again.  The miscarriage did not indicate future miscarriages.  It was likely a chromosomal issue.

I had a D&C a couple of days later.  Nothing could have prepared me for it.  The drugs took away the pain, but the sound of the machine sucking that little life out of my body would stay with me for weeks and months to come.  Probably forever.

Still, we tried again

We (make that I) used ovulation predictor kits obsessively.  We (make that I) made it a project.  We (make that I) thought of little else.

Four months later we got our second chance.  We had ultrasounds every two weeks.  At 9 weeks, the baby was growing and that little heart was beating away.  We were sure he was another boy.  We named him James, for my father.  We couldn’t wait to meet him.  At 11 weeks, the heartbeat was gone.

Complete.  Utter.  Heartbreak.

They started to run some tests.  Because this miscarriage did increase our likelihood of future miscarriages.

Luteal phase defect.

What?  These are things women don’t discuss.  Everyone talks about the ease of getting pregnant, the sleep deprivation that ensues when you have an infant, and the overall joy of motherhood.

No one talks about miscarriage.  No one uses words like “luteal phase defect”.  No one tells you that if you manage to get pregnant again, you will become dependent on vaginal suppositories to increase your progesterone levels.  Come to think of it, no one even tells you what progesterone is.

The stress set in.  Baby-making became a full time job for me.

My husband watched quietly as his wife slipped away.  He tried to talk, he tried to distract, he tried to fix it for me.  It was an impossible task.

All around me, friends started to have second babies.  It felt unfair.  It felt like we were being left behind.  It felt like we were stuck in a moment.

And so we stuck together.  I took a leave of absence from work and toured with my husband’s band for 6 weeks.  We drank wine, we cooked nice dinners, we hoped, we (make that I) prayed.  We talked to each other, but not really to anyone else.

We did what everyone else did:  We suffered in silence.

We were broken.  We didn’t need the world to know about it.

Almost 10 months after that second miscarriage there was still no pregnancy.

The doctor put me on Clomid.  He said there would be an increased chance of twins.  He said there would be mood swings and possibly ovarian pain.  We didn’t care.  We wanted results.

I got pregnant on the first cycle of Clomid.

I used those vaginal suppositories without complaint, drank milk, took the vitamins, and slept as much as possible.

At 7 months, the bleeding and cramping began.  I was put on bed rest, followed by couch rest.  I rested and rested and rested.  We tiptoed through three anxious months.

Our miracle daughter arrived almost three years after we started trying.  I cried my way through the C-Section.  I couldn’t believe it was finally happening.  I held my breath and waited for those first screams.  I pushed my husband away and said, “Go, go hold our baby”.  And then finally, she was in my arms.  She was a dream come true.

Nine months later I was pregnant again.  We couldn’t believe our luck.  We just knew it was a boy.

9 weeks later, the heartbeat was gone.

We worried that our daughter wouldn’t have the gift of a sibling.  We didn’t want her to be alone.

But 21 months after the birth of our daughter, our son arrived.  Again, I sobbed.  He managed to make it through two weeks of heavy bleeding and cramping early in the pregnancy.  He was a fighter.  He was small, loud, and cute, and he snuggled into my arms immediately.  He loved to be held close.  He still does.

We counted our blessings.  Our family was complete.

And then…a funny thing happened.

We weren’t “trying”.  But we weren’t “not trying”.  We were just living.  Our daughter was just over 4, and our son was nearing 2 ½.  And we got pregnant.  Just like that.

And so we would get a third.  An unexpected blessing.

7 weeks in, the bleeding started.  But the heartbeat was just fine.  Every two weeks, the heartbeat was fine.  The baby was growing.  I was feeling good.  Things were going as planned.

He was a little boy.  Another beautiful baby boy.

At 18 weeks, he was gone.  Just as we prepared to share our news, he was gone.

They had to induce me.  I had to birth my deceased baby boy.

Words can’t describe the horror of that scenario.

The drugs used to induce me didn’t work.  They increased the doses and watched and waited, but it just didn’t work.

I started to bleed.  A lot.  More medicine.

Finally, with my big sister by my side, the lost life was freed from my body.  But the placenta…that just wouldn’t budge.  I continued to bleed.

I went into shock.  Three times.  I worried.  My husband worried.  We slept a little.

And then, at 4:30AM, they woke us.  I needed emergency surgery.

I signed away my uterus.  Twice.

I was told that I could suffer a fatal rupture.  Several times.  This time, we both prayed.  We prayed to anyone who would listen.

In a drug induced state I said goodbye to my husband of nearly 8 years.  I tried to find the best words…just in case they would be my last.  In my heart, I knew that somehow I would get through this.  Somehow, I would return home to my husband and my babies.

I did.  In the end, they saved my life and my uterus.

For a moment we felt relief.  Our family was whole again.  The horror was over.

Except that we had to cope.  How do you cope with something so traumatizing when two little lives depend on you every second of every day?

You suffer in silence for a little while.

You cry out loud…when they sleep.

You talk to your husband.  You seek comfort from your mom.

You watch your children like a hawk and pray that no such horror ever comes their way.

You find the small moments of greatness in each day and soak them up.

You call your girlfriends.

You reach out to someone who you think might understand and, thankfully, that person is willing to become your lifeline.

You stick close to your little family of four and remind yourself that they are your happiness.

You allow yourself time outs…because right now you need them.

And then you start to talk.

You write it down.  You reach out to others.  And you just keep talking.  Because you hope that, in doing so, you might save someone else from suffering in silence.  Because if 25% of first pregnancies end in miscarriage, you can bet that someone you know is suffering.

We will suffer in silence no more.  We will talk.  Because everything’s not lost.

Note:  This post originally appeared in my weekly column for Mommy Moment on July 20, 2011.