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.

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9 thoughts on “Banding Together, Raising Awareness

  1. I did not go the TAC route but a little about me, I have the misfortune of having pprom twice, had never heard of it or IC before my losses. Thankfully after educating my self and having a wonderful doctor I had my rainbow in 2011 and am currently 25 weeks with rainbow #2. I owe it all again to my MFM and two Preventative Cerclages (TVC) and 17p. I did moderate bed rest with #1 and none with #2. I know Kathryn and I know her being so informative and outspoken about TAC has helped saved numerous precious lives.

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    • I am so sorry for your losses. Rainbow babies are so special! Congratulations on making it to 25 weeks already! I pray you continue to week 40 with an uneventful pregnancy!

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  2. Thank you for sharing, what a sad story. I can’t imagine the pain of losing your children like that. I have a girlfriend who delivered her twins at 22 weeks, they were both alive at birth but passed away soon after. They were just too small and early to survive. You and George are truly blessed to have not experienced this, and to have 4 healthy children. It breaks my heart for all of the families that aren’t so lucky.

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    • It is heart wrenching! These babies all survived a few hours after birth too, but were just too tiny to survive.
      We are incredibly lucky and grateful for our four. We do not take them for granted. I pray that sharing this saves even just one more precious life.

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