Remembering With Love: Pregnancy & Infant Loss Remembrance Day 2016

“If you know someone who has lost a child, and you’re afraid to mention them 
because you think you might make them sad 
by reminding them that they died–you’re not reminding them.
They didn’t forget they died.
What you’re reminding them of is that you remembered that they lived, 
and…that is a great gift.”
~Elizabeth Edwards~

Today, October 15, is Pregnancy and Infant Loss Remembrance Day. In 2006, after years of pushing for it, the day was recognized by the House of Representatives. In 1988, President Reagan had declared October as Pregnancy and Infant Loss Awareness Month. But in my opinion, celebrating this day for ONE day is much easier for a parent who has lost a child than for the whole month.

The International Wave of Light is the simultaneous lighting of candles in memory of these babies lost to miscarriage, stillbirth or infant loss at 7pm in your local time zone tonight. The result is a continuous chain of light spanning the globe for a 24 hour period. Just think about that for a minute. How beautiful!

So tonight at 7pm, wherever you are, light a candle or say a prayer (or do what you do) in memory of all the baby angels that are watching over us and in honor of all the parents left behind to grieve the loss of dreams and bright futures for their children. Take a minute to say their names out loud. Remember them. Realize they were here and real and loved and are still loved…

These are our special Angels and members of The Club I will be lighting a candle for tonight:

  • Our first baby: Junebug – miscarriage at 13 weeks, June 19, 2002
  • Our second baby: Charles “Charlie” Fleetwood Anthoine – died at 24 days old from late-onset Group B Strep, born May 21, 2003 and died June 14, 2003 – his story here
  • The daughter of Pam Doherty, Hannah Noelle MacDonald was born still on February 3, 2003 from Group B Strep sepsis. Her father is John MacDonald.
  • Oliver Nelson Wright, son of Chris and Danna Wright, born and died October 2, 2010.
  • Leighton Sophie Taylor – daughter of Amy and Chris, twin sister to Jaxon – born May 26, 2011 and died June 17, 2011 from Group B Strep
  • Stephanie and Anna Causley – daughters of Paul and Robyn Causley – miscarriages at 12 and 6 weeks, respectively in 2003.
  • Sara Kay – born still September 7, 2009
  • Susan and Matt’s baby – miscarriage at 12 weeks – December 25, 1999
  • Emma Jade – Kat’s sweet baby – miscarriage at 9 weeks in 2001
  • Cara Jennifer – daughter of Carrie-Ann – born and died on August 17, 2010 – lived 12 minutes
  • Jill and Kyle Clay’s babies – Baby Clay, miscarriage October 2004 and Baby Clay, miscarriage October 2005 – both around 10 weeks
  • Cora Mae McCormick – November 30, 2009 to December 6, 2009
  • Skye, Dakota and Martina – Nanna Chris and Mommy Staci and Little Sister Joclynn’s triplets – July 7th, 2007
  • Drew and Amanda’s Baby – miscarriage October 6, 2010
  • Brianna Elizabeth Franzen – Daughter of my friend, Julie. Born January 29, 1998 and died March 7, 1998 from a heart defect.
  • Cecily’s Sons – Nicholas and Zachary, October 27, 2004
  • Shauna’s Babies – one at 16 weeks, one tubal pregnancy
  • Erin’s Babies – Baby 1, September 2006, miscarriage; Baby 2, January 2007, miscarriage; Baby Girl 1, December 2008, late miscarriage; Baby Girl 2, born still on August 17, 2009 at 18 weeks.
  • Elizabeth Anne’s Baby – Baby Childs, miscarried June 12, 2006
  • Elizabeth Anne’s Friend’s Son – Jonah Oliver, delivered and died on Thanksgiving Day 1997 at 18 weeks gestation.
  • Becca’s friend’s daughter – Chandler Rivers, born 13 weeks early and died a week before her due date.
  • Jessica and Mark’s Daughter: Hadley Jane, born October 9, 2007 and died October 11, 2007.
  • Trish’s baby “Peanut”
  • Michael and Robin’s babies – miscarriage at 5 weeks in April 2009, and miscarriage at 10 weeks in September 2012
  • Olivia Grace – daughter of my friend Barbara. She was born January 8, 2004 and died August 23, 2004 from bacterial meningitis.
  • Sunday’s babies – Tomorrow Dawn- December 1993, miscarried at 8 weeks and Samuel- January 2002, miscarried at 11 weeks (named our first son Samuel in his honor and memory)
  • Lindsay’s baby – little one lost to miscarriage at 10 weeks in May 2003
  • Lynn’s 8 babies – 5 lost at 14 weeks and 3 lost early at 8-10 weeks
  • Ms. Marie’s baby – miscarriage October 1977
  • Isabella Pearl De Leon – Stillborn one week before scheduled delivery. March 5, 2011. Paul & Nicole De Leon
  • Nora Henke –  Born still December 30, 2012
  • Mike & Lauren’s babies: miscarriage at 6 wks in 1999; miscarriage at 7 wks in 2000; miscarriage at 10 wks in 2001
  • Carter Austin – March 18, 2006
  • Tucker Harris Neu and Fletcher Thomas Neu
  • Fiona Jane Tully was stillborn on May 8, 2011, and her sister, Brigid Eileen Tully, lived from May 8, 2011 to June 23, 2011 – daughters of Eileen Tully
  • Leah Brook Tomlin – daughter of Bevin and Adam, sister of Taylor. Born January 7, 2013 and died January 13, 2013 from Prenatal-Onset GBS
  • Carl Martin Kerr – passed away in utero at 6 months. Born on January 25, 2013. Baby Kerr – miscarried at 6 weeks on August 25, 2013. Both children of Solanke and Cincia and siblings to Isabella.
  • Jacob, born at 20 weeks in 2006. Lived for 52 minutes. Son of Nick and Melissa Tabbert.
  • Isabella-Rose Elizabeth, born still October 12, 2009, daughter of Tia.
  • Bailey Winter Dumitru, son of Tori and Kevin, born at rest December 8, 2007.
  • Renee’s daughter, Lucielle Diane, born and died July 15, 2013
  • Caleb Andrew Franklin, beloved Son of Julie and Andy. Born at 24 weeks on August 17, 2004 and died August 25, 2004.
  • James Chadwick “Chad” son of Jimmy and Debbie and brother to Kristen and Brandi, born and died November 16, 1980 due to a placental abruption.
  • Asher Vinsant, son of Kylie Vinsant, born January 4, 2012 and died January 12, 2012 due to Early Onset Group B Strep.
  • Eve, daughter of Wade & Kacey Dixon, born October 21, 2010 and died November 4, 2010 from Hypoplastic Left Heart Syndrome
  • Amelia, daughter of Bob and Catherine, born May 4th, 2014 and died June 1st, 2014 from Late Onset Group B Strep.
  • Angel Wills, baby of Michael and Jamie, August 2010.
  • Henry, son of Sara and Brian, born May 29, 2007 and died December 17, 2007.
  • Andrea and Jay’s baby. Miscarriage in November 2010.
  • Heather’s daughter, Clara Edith Webb, who was stillborn on July 1, 2012 at 42 weeks 3 days gestation.
  • William Benjamin Redland, born April 10, 2014 and died April 28, 2014 due to Group B Strep.
  • Beckie’s baby. Miscarriage, March 1999 at 9 weeks.
  • Jo’s babies: John Sebastian – Potters Syndrome, full term, born still November 12, 1999; Damian Paige – late term miscarriage August 20, 2005; Willow Soleil – November 18, 2013 miscarriage.
  • Alisha’s son, Mason Daniel Pablo. Born still at 26 weeks on July 23, 2015.
  • Kelli and Michael’s son, Grady Michael, born and died June 12, 2015 from Potter’s Syndrome. Little brother to Slater and Mykelyn.
  • William Barsi, son of Jennifer and James Barsi, big brother and fierce protector. Arrived at at 24 weeks, 1 day on January 29, 2013, and in doing so saved his twin brother and his mother’s lives. He died on Valentine’s Day 2013.
  • Baby Girl K and Baby EE, babies of T.
  • Chloe, daughter of Leesa, ectopic pregnancy in 2001.
  • Angela Talo’s baby, miscarriage February 26, 2006.
  • Skylar Natasha Maine Milner, daughter, younger and older sibling to John, Joanna, Haylie, and Aria. Born June 18 2013 died June 17 2013 at 28weeks.

Older “babies” we choose to remember today, too.

  • Laura Kaye Anthoine – October 20, 1969-April 3, 1981 – Daughter of Kaye and Roy, Sister of my husband Jason
  • Allison Reid – daughter of Robin and Sean Reid – though she was not an infant when she died, she contracted the same bacteria that Charlie did and suffered long-term challenges. Allison was born on March 1, 2002 and died on January 25, 2008. I had the honor of meeting Allison and she was a fabulous fighter.
  • Cason Heard Adams- January 27, 1989-December 4, 2001 , was called home to live with the angels. He was a bright light to all that knew him and is greatly missed everyday by his family and friends.
  • Chrissi’s Son: Tyler, born March 22, 1997 and died September 15, 2003

** I will add babies if you email me at janasthinkingplace@me.com to tell me you want me to add your angel. I know there are so many more, but I don’t want to publish without your permission. These are from the previous six years and I’ve added new ones. I have also decided to add a few older children because really, they’re all our babies.**

Eleven. 11. XI.

Eleven. 11. XI.

CharlieBlue

Two days old, May 23, 2003

Eleven years ago today, you graced us with your presence. You caught us off guard by coming a little bit early and taking forever to be delivered.

You caught us off guard by being so aware, so beautiful, so wise. From the moment you arrived, your eyes told your story.

They were wide and bright, inquisitive and alert. They knew too much.

They knew you had a short time.

When I look back at your pictures, so very few of them, your eyes are always open. I see wisdom and love and know that you lived the life you were meant to live.

It wasn’t to be a long life, but it was to be long enough to touch hundreds and thousands of hearts. It was long enough to leave your mark.

But no matter how many hearts and lives you touched, I would trade it all to have you back.

Happy 11th birthday in Heaven, baby boy. Every breath I take is for you.

**************************

For more information:

Late Onset Group B Strep

Charlie’s Story

 

 

 

#10ForCharlie

#10ForCharlie

It’s Sunday, two days before Charlie’s tenth birthday. I’m at a loss for words and lacking motivation to do much of anything, anticipating the day in a way that has me paralyzed.

I would suspect that’s normal, though.

I was texting with my friend Karen earlier, and she suggested I make a goal of running 10 miles this week. Then we decided we should ALL make that goal.

#10ForCharlie

BRILLIANT!

This solves a couple of problems for me personally:

One, I’m likely going to eat pizza every night this week since my husband is traveling, so I’ll be able to burn off a few calories.

Two, Henry and I can burn off some energy and (my) anxiety in the evenings with a run around the block.

It seems so very easy, really. Just pick your favorite activity — running, walking, skipping, biking — and log 10 miles this week.

If you tweet, use #10ForCharlie hashtag. If you don’t, let me know on my Facebook page.

Throw on your running shoes and get outside!

Your Group B Strep Questions — Answered!

July is Group B Strep Awareness Month.

I wrote last week about Group B Strep and GBS Awareness Month. Please read (and share) that post if you haven’t already.

I promised to answer YOUR questions about Group B Strep during July, right here on the blog. I was thrilled to get some great questions almost immediately, but I know there are more out there. Please let me know if you have questions — tweet me, FB me, email me. You ask, I’ll answer!

I was strep b positive with Cora, what does that mean for future babies? (you can answer in a post if you’d like) — Kristine (@KristineBrite) July 1, 2012

Because you were GBS+ does not mean that you will be GBS+ with any future pregnancy. Your status changes over time, as the bacteria “colonizes.” You will be tested between 35-37 weeks in your next pregnancy and antibiotic protocol will be followed according to that test.

CDC protocoldoes state that if you have a baby who contracts GBS, you should be treated in any subsequent pregnancy. GBSI advocates you and all pregnant women be screened for GBS bacteriuria (GBS in urine) in early pregnancy and treated if positive.

I’d like to know if its possible to pass gbs to the babe with a c-sec. I honestly thought it was only passed through the birth canal — Nicci (@Sticky41284) July 1, 2012

Yes. It is possible, but not as likely, to pass GBS to the baby with a c-section. In these cases, the womb becomes infected by one means or another. Bacteria could be introduced to the womb by internal exams, excessive monitoring or from what I call, random, natural means. It can happen and it does happen, but it’s rare, especially when the c-section is started before your water breaks or labor begins.

If you know you’re GBS+ and your doctor tells you that since you’re having a c-section you won’t need antibiotics, you CAN request them. Talk to your doctor about the risks v. benefits of having antibiotics before your incision is made.

Why don’t they test once you go in labor? Isn’t that the only way to be truly accurate? (and thank you, mama) — Sara (@SaraJOY) July 1, 2012

There are highly effective point of care or bedside rapid (less than 1 hour) tests available in a small number of hospitals. Yes, testing RIGHT THEN is obviously a way to get an updated, accurate reading. But unfortunately hospitals haven’t grabbed on to the rapid tests like we, the GBS community, wish they would.

The CDC and ACOG states that if a woman has not had the GBS test results given to her and a rapid test isn’t available, antibiotics will be administered based on the following risk situations:

    • baby born before 37 weeks
    • water broken for 18+ hours (12+ increases the risk)
    • you have a fever higher than 100.4°

@revsmf why don’t they automatically test all babies for group b strep postbirth? My daughter died at 2 days old, likely due this! — Sarah (@revsmf) July 1, 2012

I asked Dr. James McGregor, our best friend in the GBS fight, about this question. He said that, unfortunately, nobody has studied this. The community is interested in invasive disease and it just hasn’t gotten there yet. He hopes that one day this will be studied. One avenue of research for early onset (pre-signs and symptoms) include GBS antigen or infection biomarkers in the newborn’s urine or blood

This leads me to mention that the GBS bacteria moves quickly. If you feel like something is “off” in your baby, ask about it. Get him or her checked out. Know the symptoms (which are symptoms of other things as well).

Remember, your gut is rarely wrong.

Knowledge is power and your doctor is there to help you.

Do you still have questions? Ask and I shall answer!

Tweet me, ask on FB, ask in the comments, email me at janasthinkingplace@me.com!

 

July is Group B Strep Awareness Month

July is Group B Strep Awareness Month

I struggle with being extremely vocal about Group B Strep awareness. I would love to scream, “DANGER DANGER” from the rooftops, but for me personally, I don’t like to frighten people.

I struggle with knowing when to step in and say, “You really should head to the doctor since your baby has x, y and z symptoms because those are signs of GBS.” I’ve done it a few times on Facebook and Twitter and in real life, but the bottom line is, I don’t want to say anything because I don’t want people to think their baby is going to die just because mine did.

I struggle with being able to spout statistics, because statistics are bullshit. Yeah, the chances of a baby contracting early onset GBS are slim. It’s even more slim to contract late onset GBS. And it’s downright rare for a baby to die from late onset GBS. But when YOU are the statistic – the rare one – it’s often hard to tell someone of your experience without causing sheer panic.

I don’t struggle with talking about grief. But I do struggle with talking about Group B Strep.

July is Group B Strep Awareness Month.

So I’m here to talk about it.

For those who don’t know and who may stumble across this page, let me first tell you about Group B Strep.

What is Group B Strep (GBS)?

Group B strep (GBS) is a type of bacteria that is naturally found in the digestive tract and birth canal in up to 1 in 4 pregnant women who “carry” or are “colonized” with GBS. Since levels of GBS can change, each pregnancy can be different. Carrying GBS does not mean that you are unclean. Anyone can carry GBS. (Quoted with permission from Group B Strep International)

When will they test me for Group B Strep and what does that even mean?

CDC’s guidelines recommend that a pregnant woman be tested for Group B Strep when she is 35 to 37 weeks pregnant. The test is super simple. It’s simply a swab of the vaginal area and rectum. Results are typically back at your next appointment. At that time you’ll be told whether you’re positive or negative.

A pregnant woman who tests positive for GBS and gets antibiotics during labor has only a 1 in 4,000 chance of delivering a baby with group B strep disease, compared to a 1 in 200 chance if she does not get antibiotics during labor.

Any pregnant woman who had a baby with GBS disease in the past, or who has had a bladder (urinary tract) infection during this pregnancy caused by GBS should receive antibiotics during labor.

What’s the difference between prenatal onset, early onset and late onset Group B Strep?

Prenatal onset of Group B Strep happens before your baby is born.

Early onset relates to cases from birth to 7 days old.

Late onset typically relates to cases from 7 days old to 3 months (or later in some cases, but that’s the typical timeline for GBS to infect a baby).

 What do I look for?

Symptoms of Prenatal Onset Group B Strep:

    • decreased fetal movement or no movement after 20 weeks
    • unexplained fever in mother — signals infection

Once born:

    • High-pitched cry, shrill moaning, whimpering
    • Marked irritability, inconsolable crying
    • Constant grunting as if constipated
    • Projectile vomiting
    • Feeds poorly or refuses to eat, not waking for feedings
    • Sleeping too much, difficulty being aroused
    • High or low or unstable temperature; hands and feet may still feel cold even with a fever
    • Blotchy, red, or tender skin
    • Blue, gray, or pale skin due to lack of oxygen
    • Fast, slow, or difficult breathing
    • Body stiffening, uncontrollable jerking
    • Listless, floppy, or not moving an arm or leg
    • Tense or bulgy spot on top of head
    • Blank stare
    • Infection at base of umbilical cord or in puncture on head from internal fetal monitor

What is the outlook for a baby who contracts GBS?

Babies can be infected by GBS before birth and up to about 6 months of age due to their underdeveloped immune systems. Only a few babies who are exposed to GBS become infected, but GBS can cause babies to be miscarried, stillborn, or become very sick and sometimes even die after birth.

GBS most commonly causes infection in the blood (sepsis), the fluid and lining of the brain (meningitis), and lungs (pneumonia). Some GBS survivors have permanent handicaps such as blindness, deafness, mental challenges, and/or cerebral palsy.

(Quoted with permission from Group B Strep International)

Now we’re all caught up on what Group B Strep is. So here’s where I’m honest with you.

I don’t believe in scaring people. I believe in educating people and arming them with the information that will allow them to make informed decisions.

Unfortunately, I can’t make decisions for everyone. If that were the case, nobody would ever have their membranes stripped, internal exams after finding out they were GBS+, scalp electrodes during labor, long labors without c-sections, or choose to not have antibiotics during labor with a positive GBS status.

In short, I would put everybody in a GBS-proof bubble.

As long as there is life on Earth, there will be baby loss. There will be mothers dying during labor, babies taking one breath, babies spending weeks and months in the ICU because of life-threatening conditions. As much as we want to eradicate it, it’s a fact of life.

I’m armed with more information about GBS than most doctors, but that doesn’t mean that you shouldn’t talk to your doctor about Group B Strep. Because the incidence rate is smaller and smaller, a lot of doctors do the test at 35-37 weeks and just throw out the positive or negative results without much of an explanation. Make them explain it to you. Talk to them. Understand it.

Use your mommy and daddy instincts and USE YOUR PEDIATRICIAN. That’s why they went to high-dollar schools for a bazillion years. To help you when you need them.

The baby does something you don’t like or understand? Call them. Go in.

BE THAT MOM!

I can’t underscore this enough. YOU know your baby better than anyone and have to follow your instinct. If it says, “call the doctor,” then by God, call the doctor.

Your gut is rarely wrong.

Anyway, in honor of Group B Strep Awareness Month, I want to answer your questions.

Leave a comment (or Tweet it to me or ask me on Facebook) with any question about GBS you may have. If you don’t want to do it publicly, email me at janasthinkingplace@me.com.

I’ll post a few times this month with answers to them. And together, we will make the world AWARE OF GROUP B STREP!

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