Prenatal and postnatal complications are unfortunately not extremely rare, even in the United States. This month, Band Back Together is bringing them to light in our spotlight series.
We invite you to share your stories of any type of complication before or after the birth of your child. Whether it's preeclampsia, a cord trauma or an infection like Group B Strep, we want your stories.
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. My son's death in 2003 would be in vain if I couldn't turn it into something "good" and this is what I do. I talk about Group B Strep.
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!
by
jana;
Published on July 05, 2012
Filed under:
Birth,
Birth Trauma,
Birth Injury,
Postnatal Complications,
Group Beta Strep,
NICU,
Gestational Diabetes,
High Risk Pregnancy,
Hyperemesis Gravidarum,
Intrauterine Growth Restriction,
Placenta Problems,
Preeclampsia,
Preterm Labor,
Twin-To-Twin-Transfusion Syndrome,
Birth Defects,
Spotlight Series,
Stillbirth
Pregnancy and Infant Loss Remembrance Day, 2011
The light of a distant star continues to reach the Earth long after the star itself is gone.
- Author Unknown
Today, October 15, 2011, we pause to remember the stars of our soul that were extinguished far too early.
To the parents who are missing their babies today and always, The Band sends our love and prayers.
To our babies, the babies who never got to experience the joys of Earth and whose lives were cut very short, we miss you.
We miss you. More than anyone can ever know. We wish we could have one more moment - one single moment - with you, as if we can't have a lifetime with you.
Today, we honor the short lives of some of the brightest souls, souls that have touched many and have taught us to cherish all of life's moments.
Band Back Together's Wall of Remembrance:
Ewokmama's Baby: March 2005, miscarriage at 13 weeks
Jana's Son, Charlie: Born May 21, 2003 and died June 14, 2003 from late-onset Group B Strep
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.
Barbara's Babies: Malcolm, January 2008, miscarriage; Ophelia, April 2009, miscarriage.
Brenda's Baby: Emerson Allen Behrends, stillborn on July 10, 2001.
Amy's Babies: Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days. Mateo was born still. Anthony passed away from Transposition of the Great Vessels. Ian passed away after a short stay in the NICU.
Shannon's Baby: Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple heart defects and heterotaxy.
Sarah's Baby: Audrey Elizabeth, stillborn on August 7, 1998.
Jennifer's Baby: early miscarriage June 8, 2008.
Julie's Daughter: Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
Debbie's Babies: Michelle, miscarriage November 1991; Jonathan Edward, stillborn on June 4, 1992; 2 babies, miscarried in 1994 and 1999.
Baby Kash Michael: born June 3, 2011 and died September 28, 2011
Ruth's Son: Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
Rachel's Daughter: Mina Kathryn, born February 18, 2009, died February 24, 2009, due to complications with her PICC line.
Hubbit's two boys
Amanda's Baby: miscarriage September 23, 2010
Kelly and Brad's daughter: Lily Catherine, miscarriage February 18, 2010
Lisa's Baby: July 1994, ectopic pregnancy ended in emergency surgery.
Mel's Daughter: Jordan Ala, stillborn on November 13, 2006
Tiffany's Babies: Little Soul 1, 2008 and Little Soul 2, 2009 -- both ectopic pregnancies
Wendy's Baby: Reed Allyvion Miners, passed away July 5th 2003 at an hour old from Primary Myocardial Disease (heart defect)
Martha's Twin Boys: Owen died March 8, 2008 because his cord wasn't properly attached to the placenta. Joshua died one month later on April 6, 2008 because he couldn't live without his brother. Both were born still on April 8, 2008.
Lisa's Baby: Natasha Anastasia, September 7, 2011, miscarriage.
Ellen's Son: Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
Cecily's Sons: Nicholas and Zachary, October 27th, 2004
Suzy's Son: Starbaby, born still February 2008 due to Trisomy 18.
Venita's Son: Matthew Conner Webb, born January 11, 2005 and died February 26, 2005. He was born at 26 weeks and faced many obstacles in his short life.
Beryl's Daughter: Bella Rose, stillborn on September 9, 2009
Pharon's Daughter: Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Christine's Son: Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Joe's Twins: Jonathan Michael and Samuel Joseph, identical twins born alive and died on May 6, 2004 from extreme prematurity and twin-to-twin transfusion.
Amy's Sons: Nathaniel, born August 24, 2001 and died August 29, 2001 from an undiagnosed metabolic disorder. And David, born May 11, 2010 and Died January 24, 2011 from a myriad of complications resulting from a liver transplant.
Renee's Babies: Isaac Ephraim, miscarriage August 2006; Isaiah Jeremiah, miscarriage January 2007; Ella Alicea, ectopic pregnancy June 2009.
Amy's Baby: Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
Kelly's Babies: Baby 1, miscarriage April 2003; Baby 2, miscarriage October 2004; Baby 3, miscarriage February 2006.
Angie's Daughter: Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
Another Becky's Baby: Baby Savu, August 2004 missed miscarriage between 3rd and 4th month.
Lilla and Gareth's daughter: Pippa, born still on February 13, 2011 from listeria infection.
Raquel's Son: Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
Sarah's Babies: Miscarriages April 12, 2002 and September 3, 2008
Leah's Babies: Cameron, born and died May 22, 2009 at 10 weeks. Jeremiah Oliver and Jillian Olivia, twin babies. Second trimester loss July 9, 2010 and July 14, 2010 respectively.
Allyson's Baby: Nolan "Shepherd", stillborn at 17 weeks on September 15, 2009.
Kallay and Ryan's Baby: Baby C lost to a partial miscarriage, May 17, 2010. Baby C is survived by twin sisters, Lily and Molly who were born on December 7, 2010.
Selah Mae: Stillborn on January 22, 2002.
Maresi's Baby: Baby B #3, miscarriage at 5 weeks, September 1, 2011.
Heather's Babies: Unnamed baby, miscarriage, 6w1d, September 18, 2010; Unnamed baby, miscarriage, 6w2d, June 22, 2011; Unnamed baby, miscarriage, 5w, August 15, 2011.
Lauren C's Angels: Baby miscarried August 27, 2007; Baby Boy miscarried January 13, 2011; Baby miscarried May 9, 2011.
Amy and James's Babies: Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM); Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Leslie's Son: Cullen, stillborn September 11, 2010.
Lisa's Daughter: Kaitlyn Grace, born sleeping at 38 weeks on Saturday, May 13th, 1995. Died from a true knot in her umbilical cord.
Carey's Triplet Sons: Rudyard, Desmond, and Oscar -- June 4th, 2011, born at 22 weeks because of e. coli infection.
Lanie's Sons: Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops; and Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias - SIUDS (unexplained sudden infant death)
Ally's Son: Collin, born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
Cora Mae McCormick: November 30, 2009 to December 6, 2009 from a congenital heart defect.
Matthew Chase Sims: April 25th, 2006 due to prematurity.
Her Almost: Pregnant in December, 2007. Unpregnant by February, 2008.
Sarah's baby: miscarriage September 2006
Jessica and Mark's Daughter: Hadley Jane, born October 9, 2001 and died October 11, 2007.
Dawn's Baby: Baby Jones #1, miscarriage at 12 weeks due to blighted ovum (Empty Gestational Sac) in February 2007.
Justine and Boo's Baby: miscarriage, June 2009.
Rachel and Jesse: Babies due Aug 2008 and November 2010. Both lost to miscarriage.
Tammy's Baby: Miscarriage October 1990
Suzie's Son: Nathan Michael King, died from SIDS November 2008
Melissa's Son: Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
Kristin's Baby (Mama KK): Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
Leleisme's Babies: Ayla and Juliet, October 20, 2009 at 20 weeks; Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Kristin's Seven Babies - Eva and her 6 siblings
Jenni's Babies: Malakai Zachary born still March 10, 2007 due to Anencephaly and five more angels 7/07-5/10.
Kathryn's Son: Seth Douglas Bonnett, Our Little "Tough guy", March 27, 2008 -October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
Kristin's babies: Eva and 7 other babies lost through miscarriage due to luteal phase disorder and clotting disorder.
Elsie's Ten Possibilities: Nine Embies and Lola (2008 and 2011 respectively)
Stephanie's Son: Carter Austin Ross, stillborn on March 18, 2006 due to an umbilical cord anomaly.
Mindy's Son: Brian Vitale 9-4-07 - 6-3-10. We miss him more and more each day.
Mindy's Three Angels: miscarriages 9-2-05, 7-17-07, 9-25-10.
Stephanie's Son: Silas
Courtney's Baby: Kaycie - 6/14/2011
Heather and Aaron's Son: Aodin, October 7, 2007
Lara and Brandon's Son: Tallon, August 14, 2011
Aimee's Babies: Ziggy Ann born sleeping on January 21, 2009; Frank born sleeping May 21, 2010; and Liberty Ann born March 30, 2011 and died on April 19, 2001.
Rebecca and TJ's son: Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
InDueTime's Baby: Baby M, Miscarriage September 2011
Colleen's Babies: Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS and Ashton Karol, stillborn on February 24, 2010 prematurely at 17 weeks.
Matt and Lauren's Baby: Isla, born 14 weeks premature on August 23, 2011 and died on October 10, 2011.
Natalie's Baby: February 2, 2011
JennK's son: Will, born {today} October 15, 2002 and died on September 16, 2003 from complications of late-onset Group B Strep.
Nicole and Jake's baby: September 19, 2011 - miscarriage.
Krista's Babies: #1 son 15weeks, #2 14 weeks, #3 11 weeks, #4 13 weeks and #5 16 weeks.
Blazngfrye's Babies; Caden, miscarriage May 1989; Aubrey, miscarriage December 1993.
Leslie's Son: Cullen Liam, born still September 11, 2010
Suzanne's children: Athena Rose Moore, Girl Twin B, and 2 unknown.
Vanessa's Daughter: Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
Ally's Baby: Mary Katerina, miscarriage March 13, 2008.
**This post will be updated throughout the day, so please check back. If you'd like your baby(ies) added, please send an email to jana@bandbacktogether.com with your name, your baby's name, dates and cause of death if you wish. **
by
jana;
Published on October 15, 2011
Filed under:
Birth Trauma,
Sudden Unexplained Death in Childhood,
Prematurity,
Sudden Infant Death Syndrome (SIDS),
Group Beta Strep,
NICU,
Multiples Pregnancy,
Pregnancy After A Loss,
High Risk Pregnancy,
Twin-To-Twin-Transfusion Syndrome,
Congenital Heart Defects,
Jacobsen Syndrome,
Trisomy 18,
Anencephaly,
Helping Someone Who Is Grieving,
How To Help A Friend Through Miscarriage,
How To Help Someone Who Has Lost A Baby,
Baby Loss,
Child Loss,
Grief,
I Am The Face Of Loss,
Miscarriage,
Ectopic Pregnancy,
Stillbirth
I wanted to share the story of my family. I don’t know why I want to share it, but I feel the need to get it out. This isn’t maybe the most heart-wrenching story you’ll ever read. But it's our story.
In 1995, I met the woman I would marry. I knew pretty much right then that she was The One, but as a lazy kid right out of high school, I didn’t want to rush into things. We “lived in sin” as my mother called it for five years. We planned to get married after we were both done with school. In the fall of 2000 we married.
A year later, my wife said, “Let’s have a baby.” At least I think that’s what she said. All I heard was “We get to have lots of sex!” And boy what a lie that turned out to be. Turns out, I'm the poster boy for “it only takes once.”
So, yay me! “We’re” pregnant. What an odd thing to say. Sure I did my part, but really, it wasn’t like I ran a marathon. I got my wife pregnant. Hell teenage boys do it all the time. I was excited. I like kids.
Days turned into weeks and weeks turned into my wife ballooning into ungodly proportions. Now this was the first woman I had gotten pregnant, so I wasn’t sure how big she was supposed to get. I'd seen pregnant women before, but I never paid any attention. They weren’t pregnant with MY child.
Four months later at 16 weeks, we heard the heartbeat at my wife's doctor’s appointment. The doctor had a little difficulty finding it. Mostly because there were two in there. Twins! My wife was stunned. I was as proud as could be.
At 20 weeks we had an ultrasound. Lo and behold, not only were we having twins, we were having twin boys! As a man, that was my proudest moment. Not only could my sperm knock up a woman in a single go, they could split eggs in half! You see, I have Super Sperm.
Not having been through a pregnancy before, I thought things were going swimmingly. That was until we were sent to a specialist.
A couple of weeks later, we had another ultrasound. Things were not going as great as I'd thought. Our boys were diagnosed with Twin-to-Twin Transfusion Syndrome (TTTS). My wife was put on partial bed rest as a precaution. The doctor described what was happening as "blood and nutrients transfusing from one twin to the other." He made no mention of survival rates or anything like “bad news.” We figured it was business as normal; something we'd keep an eye on.
At least, that's what we figured until we got our hands on the Internet. Let me tell you, ten years ago there wasn’t as much information out there as there is now. And finding what was there took a lot more effort. We found a website for a foundation that explained what twin-to-twin-transfusion syndrome was and talked about "options."
This started to look bad. Our doctor hadn’t said anything about “options.” We didn’t know this was something we needed “options” for. We started to worry. Then we saw a statistics page. We had something like a 40% chance of losing the first child and an 80% chance of losing the second one.
We were crushed. I cannot imagine what my wife was feeling; I only knew what I was feeling. The Pit of Despair had nothing on me. I was an emotional wreck. And yet, I had to go to work; I had to face people and somehow NOT collapse into a blubbering mass. Inside I wanted to crawl into a hole and die. The tears and sorrow were constantly close.
See, my brother was diagnosed with congenital heart disease when he was born. He had open heart surgery when he was three days old and a pacemaker put in when he was eighteen. I knew what something serious could do to the life of a child. I'd seen it firsthand. And now I wasn’t even sure they’d get that chance.
In my mind, there would be no first birthdays, no first dates, no driver’s licenses. It was desolate. It was empty. There was no happiness, no life, no future.
Then, we had a follow-up appointment. The doctor clarified that it wasn’t the worst case. We had a good solid chance things would go all right. Things looked up and I started thinking about the future. We picked out names. Things were going to be okay.
Until my wife developed toxemia. She was put on full bed-rest. My mood soured and I spiraled into depression. But still I went through the motions, going to work, getting done what needed to be done. But there was no feeling behind it. I was a robot; an empty shell. But I kept on because I figured my wife needed me to be strong. My mantra was “we will get through this, everything will work out.”
I believed none of it.
My mother came to stay with my wife while I worked, which was the single biggest help. My mother was an RN. She knew what she was talking about. My wife had her very own nurse.
At thirty one and a half weeks, I got a phone call, I needed to come home now. As in GETYOURASSHOMERIGHTFUCKINGNOW! Understandably, I freaked. I raced home. Mom said things were not good, my wife’s blood pressure was through the roof.
My wife was admitted on February 14th. That’s right, Valentine's Day. Here you go Dear, I didn’t get you chocolates, but I got you a nice hospital admission!
I was confused - we were months away from the delivery date. My mom informed me “they don’t keep you in the hospital for months,” but I didn’t know what she meant.
I figured it out when five days later, my wife delivered two premature boys. One was 2.5 pounds, the other was 1.5 pounds. The smallest fit entirely in my hand. I was so scared. And the first two weeks after were worse than the month before. Because now they were real - they had names. They were ours. And if we wanted to see them, we had to drive 45 minutes to the hospital. Every day. And every night we came home to empty cribs. And cried.
But God smiled on us. And if you don’t believe in God that’s okay. But a miracle did happen. They grew. And they became healthy. And before we knew it, we brought them home. And there was great rejoicing.
These days, they're healthy nine-year old boys with way too much attitude for my liking. But I love them just the same.
Just how it should be.
