Birth Injury

Prenatal and postnatal complications are not as rare as we'd like to believe, even in the United States. This month, Band Back Together is bringing this 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.

Have you experienced complications during pregnancy or immediately after?

My daughter is a tiny woman, but pregnancy agreed with her. She looked, and felt, wonderful - the hormones seemed to right all the wrongs caused by the mental illnesses she inherited from every single member of her family tree.

She had a difficult labor which could have been greatly improved by the hospital, nurse, and OB/GYN. In the end, she had to have a cesarean section.

After delivery, the hospital told her she'd had both a vaginal and cesarean delivery since the baby had been in the birth canal so long. The poor baby looked horrible after that ordeal; they took her picture a couple days later when her face had recovered from the trauma.

My daughter had lost so much blood that she was grey. On the day of discharge, she had a fever; they gave her acetaminophen and sent her home. She called the doctor's office three times with concerns about bleeding and worsening pain.

They told her it was a normal part of recovery from the c-section.

At the baby's first doctor visit the following week, the pediatrician told her to go to the hospital immediately.

My daughter's uterus had ruptured - not along the incision, which happens sometimes, but vertically. She was full of infection - her uterus was shredded. Because she was so young and had just given birth to her first baby, they repaired the uterus. She was in the hospital for ten days with a team of doctors overseeing her care: a surgeon, an OB/GYN, an infectious disease specialist, and a hospitalist.

She couldn't walk, but she wanted to nurse the baby. Someone had to stay around-the-clock to take care of the baby as the baby wasn't a patient. My daughter had drains on either side of her incision and a PICC line for the high-dose antibiotics. She was discharged with two more weeks of antibiotics.

Her husband left for National Guard training and I stayed with her most of the summer. Months and months of pain, doctors appointments, pain medications, plus taking care of a newborn - it was a difficult time.

She could have sued, but waited too long.

The good news was that the baby was fine; she nursed through this whole ordeal. The bad news was that my daughter had one parent with bipolar disorder and the other with borderline personality disorder along with addiction issues. She, herself, had abused drugs in the past. After all she'd been through, my daughter ended up addicted to painkillers, which then led to other drugs.

Her husband was stationed in Egypt for a year. She had an affair and became a heroin addict. Her marriage survived. They are now living with her dad.

For about a year, I would not talk to her because of the affair and her behavior. We've established boundaries and now have contact. I get to spend time with my granddaughter, who is now five years old and seems well-adjusted and happy. I don't see any signs of mental illness or abuse and am so thankful.

Currently my daughter is waiting to find out why she hasn't had a period in a year - she's full of endometriosis and cancer has been mentioned. Again, there is a family history.

Fortunately, all those women had hysterectomies and survived.

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!

It's been a long time since I thought about those first few days with my daughter. Actually, that's a lie. There's not a day that goes by that I don't think about the encephalocele, that pesky bit of brain matter growing out of the back of her head. The still-growing scar on her misshapen skull makes damn sure of that.

It's always peeking out, just below her curls.

I wonder what she'll think of that, someday, when she realizes that she's not quite like the other kids. I know there will come a day where she hates it, another when she accepts it, and another when she realizes just how grave a situation it was...and what a miracle it is that she is still around today.

I know enough, thanks to my nursing background, to know what an absolute miracle it is that she's walking around, talking, and demanding that I paint her bedroom pink. Not a day goes by that I don't thank her for showing me the way, for helping me find my light, and for using that light to help others.

She's the reason we, this Motley Band, are here. She's the sole reason that this site, which has helped so many, exists. Without her, I'd just be some blogger with a blog that I use to pontificate about the underrepresentation of kumquats in today's media. I'd still be Your Aunt Becky, but I wouldn't have done this. Any of this.

In her short life, she has altered the path of so many. In her three small years, she has done so much more than I ever will.

While I could sit here, raging against her birth defect - which has given me a wicked case of PTSD - I don't. I celebrate it. I celebrate that one tiny bit of brain that has changed the course of my life forever.

Today, I ask you to share your stories of birth defects, birth trauma and birth injury. There are so many of us out there in the shadows, waiting to share how their lives have been changed with a few small words, a diagnosis.

The greatest stories remain untold, of course, not from a desire to tell them, but from a lack of an understanding ear.

In here, in this cozy library, fire crackling in the background, as we sit on overstuffed leather chairs, we are ready to lend you our ears.

Please help me put the spotlight this January squarely on birth defects, birth trauma, and birth injury.