The Voice of Miscarriage {Guest Post}

©FourtoAdore.com Photo Note: This sunset photo was taken in Puerto Vallarta in November 2011 shortly following our miscarriage experience. That particular trip proved very powerful for us, and what would be our final trip as a childless couple. Our quadruplets were born in July 2012.

Approximately 30% of pregnancies end in miscarriage, chances are you or someone you know was affected.  Today, Erin is sharing her voice on this sensitive subject in honor of Pregnancy & Infant Loss Awareness month. 


If you were to ask me how many children I have, I would likely say that we have four: a three year old, an eight month old and that I have two bonus kids who are 11 and 14. What I wouldn’t say, and what you wouldn’t know is that I really have seven children. I have four here with me, and three angels in Heaven. One might wonder, why I didn’t mention the other three. If I did, I would force you to have a potentially uncomfortable conversation. You see, I had the unfortunate experience of having a miscarriage, not once, not twice, but three times. I lost three children. If I told you, you might say the wrong thing, or nothing at all. You might inadvertently discount my feelings or the experience itself. You might do these things because you “don’t know anyone that has experienced this.” The truth is, it is almost impossible that you don’t. Chances are you know someone who has experienced the loss of their unborn child. Your friend, your neighbor, a family member, perhaps even your own mother. Miscarriage is much more common than one would think. The problem is, few people talk about it and few people know how to support those experiencing it.

Sometimes even those closest to us, such as our spouses don’t know what to say or do. They don’t understand why we are still crying weeks or months later. Why our voice cracks at the mention of it…sometimes even years later. For men, sometimes they just don’t establish a true bond until they can feel the baby, see the baby and sometimes not until after birth. For them it is different. With that, husbands, boyfriends, wives or girlfriends….please offer support to your significant other. Just because you haven’t yet bonded, doesn’t mean that it is any less real. Understand that it is a death. There will be crying, grieving, a lot of questioning as to why this has happened, anger, dwelling…the list goes on. Ask how your significant other is feeling, both emotionally and physically. If she is questioning when you can try again, be open to discussion. That alone can give some women hope that one day they will be a mom. If your spouse can’t even approach the topic of another try, that’s okay. Revisit later. Be whatever she needs you to be. Realize that they may change from moment to moment, day to day. Whatever you do, remember that this is excruciating, heartbreaking and can take a huge toll on both the emotions and body of a woman. Be present.

It can be extremely difficult for others to understand the pain of this experience. I feel compelled to explain this for anyone who has ever found themselves saying the wrong thing, or not being there for someone. For those that one day will be in a position to say something and not know what to say or do. For anyone who has ever experienced this and felt alone in the darkness.

By sharing my experience, I hope somehow it may bring someone comfort knowing that they are not alone, other women have been there, felt the same darkness, the same disparity, and the same gut wrenching pain that goes beyond the loss itself. After miscarriage, you find yourself sad about what might have been.  You feel like a horrible friend when you realize that you are bordering on angry when a friend or relative announces a pregnancy, or has a baby. You get angry when someone complains about their baby crying too much or waking too much, or stretch marks, discomfort in pregnancy and so on….all the things that you would give ANYTHING in the world to experience…because it would mean that your baby is alive.  It causes one to be terrified the next time that they become pregnant.  You constantly scrutinize every little thing in your body…what was that pain, I didn’t feel the baby in the last hour, it’s taking them a long time to find the tiny little bean during that first ultrasound, taking too long to find the tiny heartbeat on the doppler…thoroughly inspecting the toilet paper looking for the tiniest speck of blood, checking for a heartbeat at home multiple times a day just to make sure the baby is still alive….the list goes on and on. It really can wreak havoc on someone, not just in the weeks after, but for months and years potentially. Miscarriage steals the ability be in ignorant bliss during subsequent pregnancies…it can tarnish the happiness one should and would be feeling, because the anxiety and fear take over. It can even cause postpartum anxiety and fear. Miscarriage is real. The loss is real, no matter how early on it occurs. As a mother, the minute we learn that we are pregnant, no matter how early…we are that baby’s mother, they are our child and our love for them runs deeper than any other love could. We are attached emotionally and physically immediately. We mourn the loss, we grieve, it is a death, a life taken too soon, a life that will never be, a dream that will never be realized and fulfilled…

For friends and family of those going through this, or who have…I hope this guides you to a place of better understanding. To a place that will allow you to be there and be of great support to those in your life that have experienced this tragic loss. For all of you have experienced this loss, you are not alone. Know that there is hope. While it is sometimes very difficult to find hope, keep the faith and move forward. There were times that I thought I would never be a mom. After three consecutive miscarriages and after finding out that I had a genetic blood clotting mutation, I went on to have two healthy and happy little boys. It took some work to keep these boys safe until it was time to meet the world, but my dream has been realized. My heart is full and while the sadness surrounding the loss of those three angels will never disappear, the void has become smaller and I know that they are watching over us and one day, we will be together again.


Erin is a work from home mom. She is a Corporate Recruiter by day and a mommy by day and night. She has two boys, Kieran (3 years), Kohen (8 months), and two bonus children, Abby (14 years) and Keegan (11).  In her spare time she enjoys spending time with family, her Great Dane – Izzie, and crafting when she can find the time.


Related Posts:

Tips for Helping a Friend After Miscarriage

The Gifts of Infertility & Miscarriage

Reflecting on Miscarriage

Pregnancy & Infant Loss Remembrance Day: October 15

Banding Together, Raising Awareness

Despite having a few scares, George and I were lucky during my pregnancy and subsequent NICU stay. From the moment we learned we were expecting quadruplets we were painfully aware of the inherent risks for all involved and we chose to accept them.   Even knowing these risks, it never occurred to me that we may not take one or more of them home.  The past year has been a difficult one in our community of quadruplet families.  In the past eight months we’ve wept as many families lost one or two babies.  And, three different families lost all four babies due to extremely premature deliveries.   The Peterson family was the latest to suffer this grave loss.  They bravely share their story and photographs on their Facebook page, Prayers for the Fantastic Four.

Jen and Chris shared this photograph of their angels.

Here, Jen embraces three of her angels.  Her first daughter, Serenity, is represented by the teddy bear.  Serenity was delivered  two days prior in hopes of saving her mother and siblings.  Unfortunately, the delivery of the remaining three could not be prevented.  The Peterson family has a Go Fund page established to help offset funeral and hospital expenses.  If you are able, any donation is appreciated.

What broke my heart even more was knowing that these lives may have been spared.  I believe this because of my friend, Kathryn.  Before I met her, she lost her twin boys at just 16 weeks due to incompetent cervix.  Since her losses, Kathryn has become the most articulate advocate of TACs I know.  Because she is the expert on this topic, I asked her to share her knowledge in hopes of raising awareness and helping mothers realize their options.  Here are Kathryn’s words:

Ever watch Dexter?  It’s a Showtime program chronicling the ongoings of a serial killer while following a moral code.  Dexter successfully detaches himself from his killing tendencies by referring to that part of himself as his ‘Dark Passenger.’  I have a Dark Passenger, too: an incompetent cervix.  And it killed my sons.

The cervix sits between the uterus and the vagina and acts as a safe keeper of baby.  A good cervix stays closed during pregnancy and holds baby in tightly.  A column of mucous forms in the center of the cervix to plug any possibility of good (or bad) vaginal bacteria ascending.  At the end of the gestation, contractions essentially slam baby into the cervix repeatedly to send the message, “Hey, open up, it’s time!”  After that timely prodding, the cervix will dilate and allow baby to be pushed out vaginally.  There are some other things that tell the cervix to get ready – but those also all occur at the END of gestation.

In contrast, an incompetent cervix fails.  It opens willy nilly – even at 16 weeks!  It could open ever so slightly to lose bits of the mucous plug and allow bacteria to ascend.  It could open just at the top forming a funnel that baby slips into causing all sorts of problems.  It could even open all the way causing the baby to fall out.  And just as fast as it opens, it can close back up never having its misbehavior detected.  This earns an incompetent cervix the nickname ‘Silent Killer.’

Diagnosis of IC can be difficult.  The cervix can change so frequently, that often it’s not detected as problematic until an emergency arises.  Most often, women must lose several 2nd trimester pregnancies before most doctors will even consider IC as a diagnosis.  Doctors treat it as a diagnosis by process of elimination rather than a diagnosis based on IC symptoms.

Treatment options are severely limited by gestation and severity of the situation.   In a nutshell, current treatments include:

  1.  Wait and Watch Approach – Doctors may suspect (or even KNOW) a patient has IC and elect to simply monitor the cervix via ultrasound every two weeks from about 16 weeks to 24 weeks gestation.
  2. Preventive Transvaginal Cerclage (TVC) – entering through the vaginal canal, a cerclage is stitched in/out of the bottom of the cervix, pulled taught like a purse string, and tied off.  This placement occurs between 10 and 14 weeks gestation as an attempt to prevent any cervical changes occurring and becoming problematic.  The TVC is removed at the end of pregnancy to allow for vaginal delivery.
  3. Rescue/Emergency Transvaginal Cerclage (TVC) – This occurs during the pregnancy when doctors notice that a dangerous change has occurred in the cervical length or dilation.  There are many limits to even utilizing this option as there has to be enough length remaining to place the stitch and most doctors will not place a rescue cerclage at gestations close to or beyond viability (24 weeks).  Again, the TVC is removed at the end of pregnancy to allow for vaginal delivery.
  4. Transvaginal Cervicoisthmic Cerclage (TVCIC) – A TVCIC may be placed prior to or during pregnancy.  Though this is still a vaginal cerclage, it is placed ABOVE the cardinal ligaments.  It may be removed to allow for vaginal births or left in place for future pregnancies (and a c-section performed).  Fewer doctors currently know about and perform TVCIC than TAC.
  5. Transabdominal Cerclage (TAC) – A TAC may be placed prior to or during pregnancy at 10-14 weeks. Through an incision in the abdomen, a mersiline band is placed AROUND the very top of the cervix to disallow dilation.  Vaginal delivery is impossible with a TAC and a c-section is required.

Once a person is diagnosed with definitive IC, there should be no question that placing a preventive permanent transabdominal cerclage (TAC) is the correct path.  (side note: tvcic is a viable option, but I reserve recommending tvcic in only extreme situations such as a rescue or when multiple abdominal incisions would occur in such a tight time frame that increased risk is assigned to the patient)

While statistics depend on each doctor, here are a few rough numbers to consider:

Success rates of TVC = *80% for a live birth (about 40% of these births are preterm)

Success rates of TAC = 97%+ for a live TERM birth (certain TAC doctors have even higher success rates)

*these may be exaggerated because some women receive TVC placements who do not actually have IC and are counted towards being a TVC success even though they would’ve been successful without one.

Clearly, TAC gives the best possible outcome for baby’s life.

Another consideration ought to be the quality of pregnancy.  With IC, uncertainty rules pregnancy.  Every twinge, every pain, every flutter, every kick, every toilet visit – it’s all filled with dread and fear.  As odd as it sounds, IC support sites are filled with pics of women asking if discharge looks normal.  On top of that, TVCs often require (and I ALWAYS recommend) bed rest to keep as much pressure off the cervix as possible.  Forget baths, exercise, intimacy, lifting toddlers, etc.  Your baby’s life is relying on that thread of support at the bottom of the cervix.

With a TAC, IC considerations are gone.  The cervix will not budge.  Even if the length shortens, the cervix cannot dilate.  It cannot open and allow baby to slip out.  Baby is baking until doctor says otherwise! Unless it’s for other non-IC reasons, bed rest is not required.  I personally worked up until the day of my c-section and that is the norm for TAC sisters.  Pregnant in the summer, I spent hours each day in the pool.  In the winter, I practically lived in the bathtub.  Intimacy was allowed.  I was able to lift what I wanted, shop til I dropped, and live my normal life.  TAC allows normal pregnancy!

As women, we rely on our doctors to prescribe the best treatment.  We assume they have the same goal – and same urgency – at protecting our babies that we do.  To be clear, I do not think doctors prescribing a preventive TVC have the ill will of wanting to risk or kill our babies.  Unfortunately, every doctor placing a preventive TVC or advising a wait and watch situation when IC is known is doing just that: risking your baby.  Sometimes it’s due to a lack of education, but sometimes when you press the doctor, you’ll hear them utter, “If this doesn’t work, then next time…”

So what can a mama do?

Educate yourself on the realities of cervical insufficiency.  Understand how the cervix should work and how it fails.  Fully understand what each treatment option entails.  Find women to talk to on support boards about their experiences.  Evaluate your lifestyle and mental health and figure out what you could realistically handle during a pregnancy.  Speak to the top IC doctors in the country (Drs. Haney, Davis, and Sumners).  Talk to your OBs and MFMs.  Pointedly ask them what happens if you funnel to the stitch and shorten at 22 weeks.  Ask them what will happen if your membranes bulge or baby’s leg dangles into the vagina.  What then?  Ask them who makes the final call on treatment for baby.  Remember, this is your body, your baby, and your choice.  Nobody is going to look after preserving and protecting your baby better than you are.

As a specific point, I want to offer an asterisk to all the successful tvc stories you may hear: firstly, a woman with known IC could absolutely have a completely normal, intervention-free pregnancy.  That’s the crapshoot of IC: sometimes the cervix works and sometimes it doesn’t.  It may behave well during one pregnancy and terribly during another.

Additionally, you need to understand this equation:

TVC Success = surgical skill + cervical behavior

TAC success = surgical skill

With an IC diagnosis, you already know your cervix does not work.  Understand that choosing a TVC continues to rely, in part, on the behavior of that broken cervix.

For me, TAC was the muddy answer at the time, but oh how clear the waters have become.  I was able to slaughter that serial killing Dark Passenger who stole away my sons and conquer IC altogether.  I now have beautiful twin rainbow daughters thanks to my TAC.  And I will never regret choosing life at any cost for them.

Kathryn Nguyen is a proud mother to two sets of twins and a prayerful TAC-only advocate.  Visit her blog Beyond This Desert for more information on cervical insufficiency and TAC.  

Three other quad mom bloggers joined me in the effort to raise awareness on this sensitive topic, please visit:

Capri + 3

Chillin’ with Chad

Quads from Heaven

In honor of Pregnancy and Infant Loss Remembrance Day, I addressed my own losses, Casting a Light in the Darkness & Reflecting.

Cast a Light in the Darkness

cast a light in the darkness

Today, October 15th, is Pregnancy and Infant Loss Remembrance Day.  Each year on this day, I reflect upon the past few years with the challenges we’ve overcome.  It’s hard to believe that just two years ago, our dreams of having a family seemed shattered.  After our third round of IUI, George and I finally got the coveted BFP (big fat positive).  When we went to the first ultrasound, we saw the most beautiful, strong fluttering heartbeat.  I recall my doctor happily stating that 97% of the time when a strong heartbeat is seen, the baby is delivered to term.  We were filled with naivety and confidence after that appointment.  So confident, in fact, that I went alone to the next ultrasound appointment.  Epic mistake.

At the second appointment, the dreaded words, “Your baby stopped growing” stung my ears.  I recall a numbness filled with confusion.  I thought, “What does she mean???”  I sat in the doctor’s office alone in a horrid paper gown flummoxed.  That was when I became the newest member of yet another club that no one want wants to join- the “I suffered a miscarriage” club.

Unfortunately, miscarriage is relatively common, estimated to occur in 10-20% of pregnancies.  It happens to our mothers, aunts, cousins, sisters, daughters, and best friends.  Yet, it alienates us from the very people we hold dearly because only those in the dreadful club truly understand the agony it causes.  Sometimes we suffer alone, while other times we openly share our wounds only to find that those who love us inflict even more pain.  Prior to my own experience, I didn’t have the foggiest concept of miscarriage.  Perhaps I was an offender to those around me, saying “helpful” things that were anything but.  Because miscarriage is common, chances are you know or will know someone in the dreaded club so please be a friend to her and consider my thoughts on the matter.

Recognize that your friend is grieving. Even though the baby was tiny and perhaps she didn’t even know the baby’s gender, the mother was attached to her baby the minute she knew he existed.  She had hopes and dreams for her baby that were crushed.  Most of all, it was the loss of what will never be.  With each passing day, the mother knows her baby will never be part of her family to celebrate holidays, snap family portraits, or to snuggle at night. That is devastating.  It is not the same as other losses, but it is a loss nonetheless and the mother is experiencing legitimate grief.  Consequently, she needs the help of her friends so,

  • Don’t marginalize her pain or experiences with insensitive words such as, “At least it was early. ” or “It was God’s plan”, or “Everything happens for a reason”.
  • Don’t ignore her grief.  It is just as hurtful for friends to ignore the pain of a miscarriage as it is for them to say something insensitive.
  • Don’t inquire about future family planning or make statements about whether the couple should continue trying or not.  Unless your friend specifically seeks advice in this area, it’s really none of your business.

Instead,

  • Keep your words simple and supportive.  “I’m so sorry for your loss”, “You are in my thoughts and prayers”, or “I am here to listen.” can be very powerful.  There’s no need to say more because chances are you may inadvertently say something hurtful.
  • Send her something letting her know you are thinking of her.  A simple card is plenty, but flowers or donations to charities in the family name are other thoughtful ways to honor the loss.
  • If you have a new baby or are an expectant mother, understand that your friend may find it difficult to talk to you about your baby or pregnancy.  It has nothing to do with you.  Rather, your friend is likely experiencing intense pain that is exacerbated by seeing your joy.  She is not jealous of you, but she is reminded of her loss.  Give her time and she will find healing.
  • Help her seek help (if needed).  After a miscarriage, the mother’s hormones are in a state of flux where emotions run high and low.  For most mothers, intense feelings, including depression subside within a few months.  If your friend seems to be struggling immensely after several months pass, encourage her to speak with her physician.

If you are reading this, I hope you head my thoughts about this if it happens to a friend of yours.  Miscarriage is an extremely difficult experience and the support of friends is critical.

Tonight, we will light this candle for an hour in memory of our first as we will do every year.

Tonight, we will light this candle at 7:00 pm for an hour in memory of our first baby, helping create the “wave of light” across the world.

hugs,

Amber

Reflecting

Today is October 15th, but I’m sure you knew that already.  It may not mean much to the average person, but holds special meaning to families all over the globe as it is Pregnancy and Infant Loss Remembrance Day.   At 7:00 pm, households burn a candle for one hour in their respective time zones.  The resulting chain of light will span the globe for 24 hours to honor and remember children who die during pregnancy or shortly after birth as an “International Wave of Light”.  Reflecting on the past year, it has been an incredible journey that we never could have imagined.

Pregnancy and Infant Loss Rembrance Day candle

12 months ago, I wrote this:
“Sweet Angel, I will never understand why you only stayed with us for a brief time, but I can tell you this-I did love you and would have done anything I could to protect you.  The moment I knew of your existence, I fell in love with you and when I saw your tiny heartbeat, my heart melted.   I did everything I could for your well-being.  I know that you didn’t leave because of anything I did, or did not do, but I want you to know I did everything I could for you. I got just a little taste of what it is like to become a mother and to want to protect someone with every fiber of my being.   It is a feeling like no other to love someone that way and I am happy I got to feel that even for just a moment.  Despite all of the emptiness I feel from your loss, I am truly happy you were here.  You gave me hope that we will one day have the family we have been dreaming of for so long, and for that I am grateful.”

11 months ago, we traveled to Puerta Vallarta as an escape from our infertility struggles. We saw four beautiful baby sea turtles travel out to the sea and they gave us hope of having a family.

10 months ago, we celebrated Christmas not knowing if we would ever celebrate that special time with children. Apparently the only picture taken was of our nativity.  It served as a reminder that we are never alone for He is with us.

9 months ago, we went to our Reproductive Endocrinologist for our fourth and final IUI (after four they consider IUI a fail and recommend moving to IVF). Reminders of the sea turtles were everywhere, giving us a sense of calm and hope.

8 months ago, we went in for our first ultrasound and discovered four healthy heartbeats. Although we were told that one or more may “vanish” or that we should consider a reduction, we knew that all four were meant to be and would be healthy as we remembered the four sea turtles.

7 months ago, we started preparing gender neutral nurseries for four.

6 months ago, we discovered we were having a girl and we named her Rylin Skye.

6 months ago, we found out we were having a boy and we named him Harper Stone.

6 months ago, we learned that we were having another girl and we named her Sydney Raine.

6 months ago, we discovered we were having a second boy and we named him Mason River.

5 months ago, strict bed rest began and I was only allowed bathroom privileges. Thankfully, I have an amazing husband who took care of me and friends who kept me company.

4 months ago, I was still on bed rest for my baby shower. I cheated a bit and moved from bed to the sofa for a few hours.

3 months ago, we made it to 30 weeks, 5 days of a quadruplet pregnancy.  On July 20th,  forty little fingers and forty little toes entered our lives. As an aside, I didn’t actually count a single finger or toe until several weeks after the babies were born. Fingers and toes just didn’t seem very important in the scheme of things.

©FourtoAdore.com

2 months ago, our four were in the NICU growing and getting strong enough to come home. At four weeks old, they were able to take their first picture together.

©FourtoAdore.com

1 month ago, all four babies came home within a week’s time.  Our home was finally filled with the family we dreamed of.

©FourtoAdore.com

Today I know what it is like to hold four healthy babies in my arms at the same time.  After the years of struggle, I do not take them for granted.

Tonight, we will light this candle for an hour in memory and honor of our first as we will do every year.

http://www.october15th.com/

We will never fully understand why our first baby was with us for such a brief time nor will we know why we are now blessed with not one, but four healthy babies.  We know that He has great plans for us and is always with us no matter the tears or triumphs.  We are on now the most incredible journey of raising quadruplets and we wouldn’t have it any other way.

in peace,

Amber