For those of you who may be sensitive about photos of stillborn babies, please stop scrolling down when you start to see the tops of the photos. Here's the basics of my story (full version here):
My fourth child, Julia "Rose", was stillborn in 1998 just three days before July 4th, my due date. After three healthy children I never imagined that this could happen, especially since this pregnancy had been the easiest one for me.
When I cultured positive for group B strep in early June, all four of my obstetricians made GBS seem as if it wasn't anything for me to worry about (no big deal!) although they couldn't or wouldn't tell me much about it. I had never heard of group B strep before and, since my baby books at home made no mention of it, I falsely assumed that the doctors must be right. Although this was 19 years ago, still I hear from moms (even in the US where all pregnant women should be tested) who didn't hear or know about GBS until their baby became infected.
For those of you who aren't familiar with group B strep, it's a naturally-occurring type of bacteria found in the intestinal and reproductive tracts in about 1/4 of the population, men and women. It's usually not harmful to healthy adults, but can be deadly to babies due to their undeveloped immune systems. According to the CDC, GBS is the leading cause of sepsis and meningitis in newborns in the US.
Here are some of my "what ifs" that quite possibly would have made the difference for Rose and, although I wish I could turn back time (I accepted long ago that I can't), hopefully these "what ifs" will make a difference for another family.
1) What if my doctors had paid proper attention to any of my multiple complaints of vaginitis symptoms (which GBS can cause)? That's probably too much information already, but it's a common "what if" for GBS stories.
2) What if one of my doctors hadn't told me that the IV antibiotics I was going to be given in labor and delivery killed the bacteria "instantly" instead of needing to be there as soon as my labor started or water broke to get at least four hours of IV antibiotics to be optimally effective? I would have known I should go to a much closer hospital, not one almost an hour away during rush hour traffic, when I started having contractions and Rose was still alive inside me.
3) What if the doctor hadn't stripped my membranes WITHOUT even the courtesy of any consent or forewarning? I had my regular OB checkup at 4:45 PM the afternoon before I delivered Rose. I was so glad to hear her healthy heartbeat, but then the doctor examined me very forcefully to see if I was dilated. During all of my prenatal care, I had never had a doctor bear down on me like that for a cervical exam. I thought to myself, "What the hell is this man trying to do? See if I have my tonsils in from the wrong end?" and for a split second I thought I should take my foot out of the stirrup and kick him in the face. Afterwards, the nurse handed me a mini-pad saying that I might bleed a bit and, over an hour later, I told my sister-in-law that I could still feel the forcefulness of his exam. (Membrane stripping is a procedure meant to help induce labor. The provider sticks his or her fingers through the cervix and attempts to separate the "bag of waters" from the uterine lining. It's a common practice which is done even though the CDC says there isn't evidence that it doesn't increase the rate of infection. The CDC also states that GBS can cross intact amniotic membranes (the OB did not know this when I went in postpartum) so why should a provider be able to push bacteria closer to a baby? (More about membrane stripping here.) This is a very common "what if" among parents whose babies are stillborn and membrane stripping quite often happens without consent.
4) What if I had been told that a fever in the mom could be a sign of infection in her unborn baby? The next morning I went into labor at 5:00 AM with contractions 10 minutes apart. At 5:50 AM my contractions suddenly went to 1-3 minutes apart and I started retching and had the chills. Had I made the connection about the fever, again, I could have gone to a much closer hospital. Having a fever is a very common "what if" among women whose babies are born still or very sick.
I felt Rose kick me while I was waited in the nurses' station for a room; my request for IV antibiotics was in my hand. However, by the time I got into the labor and delivery room, there was no fetal heartbeat. My membranes were still intact and had to be ruptured before Rose was stillborn just 24 minutes after arriving at the hospital. The only nurse in the room issued a "code pink" and, bless her heart, she did the best she could until the resuscitation team arrived. At some point after that, one of my four OBs showed up; however, Rose could not be revived.
Autopsy results showed chorioamnionitis (infected amniotic fluid) and pneumonia due to Group B strep so obviously this bacteria had crossed my intact membranes. Four out of five health professionals advised us to NOT have an autopsy done as it would most likely not determine the cause of Rose's stillbirth. We decided to at least have a tissue sampling of Rose's heart and lungs cultured, although testing of the placenta should have been suggested in a timely manner to us. (Finding out the "why" is often important for closure and to know risk factors for any future pregnancies.)
As I've mentioned Rose was stillborn 19 years ago. I was not given accurate information then to help protect Rose from group B strep, but even more recent parents (stories on our website here) are being blindsided and adding to our collective "what ifs."
Here are some examples:
"When Ella started getting unusually fussy at 13 days old, I contacted her pediatrician twice. She was crying, but it was different this time - a sound I hadn't heard before. "Babies cry", he said. "Get used to it", he said while he laughed. When I contacted him again about her not eating, he said give it more time." Ella died two days later from group B strep on November 25, 2012.
"My husband and I went through the horror of getting an autopsy done. We wanted to know the cause of death. She died from sepsis caused by GBS. We never heard of this bacteria before in our lives! Our gynecologist never told us about GBS! II was never suggested to me that I should be swabbed! My baby could have been alive today If I was only given some antibiotics during labour!" In November 2016 Divyashri died the same day she was born. Her parents live in Trinidad where they don't routinely test for GBS....yet.
"I had back to back pregnancies. I lost Emma at 20 weeks in 2012 and Braiden at 17 weeks in 2013. For both babies I went in for a normal appointment and no heartbeat could be found. I gave birth, and both autopsies showed GBS as cause of death since the babies had GBS in their hearts. I was told after Emma that this was a once in a lifetime thing to happen and it would not happen again.A few months after Braiden's death I received a phone call from the Health Department stating that I should have had daily antibiotics starting at 10 weeks." Staci has not been able to become pregnant since then.
Please help us make a difference by using our experiences to inform and empower women and their providers to help protect babies from group B strep disease.
Please help by:
Learning about group B strep disease prevention here.
Contributing as generously as you can so GBSI can push ahead for the projects mentioned below. This is a grassroots effort -- we work from my dining room table. Your donations are very much appreciated.
Sharing this campaign and GBS information with your family and friends.
Mother of Rose
Cofounder and CEO of Group B Strep International
What if we had known how to help protect our babies from GBS?
1) Learn about GBS at www.groupbstrepinternational.org
2) Contribute to the cause by making a donation
The first $25,000 raised ~ GBSI plans to exhibit and/or present at two important international conferences, such as FIGO 2018 and ISPID-ISA 2018, and the American College of Nurse-Midwives 63rd Annual Meeting & Exhibition as well as cover our routine printing and shipping of GBS info to parents and perinatal providers.
The next $5,000 raised~ Have our website and all of our GBS materials fully translated into Spanish and then print and ship Spanish-language GBS info to the many requests we've had over the years.
The next $40,000 raised~ Will provide funding to implement statewide distribution of GBS info through two US State Departments of Health and one smaller country's Department of Health. Funding would include staffing, printing, and distribution of materials. (See what GBS mom, Bevin Tomlin did with the State of Alabama!) AND work with those Departments of Health to ensure that babies' death certificates are being updated when pathology tests results are available so that GBS infections are counted! (We learned that this isn't happening as it should - even in the US - when we were at a perinatal conference in Uruguay last year.)
3) Share our posts through your social media
Share ways to promote July as International GBS Awareness Month by clicking HERE
If you are a GBS parent and haven't already, share your story for GBSI's website by clicking HERE
Let’s make this the best July so far for GBS awareness!