Defining Prenatal-onset Group B Strep Disease (POGBSD)

9/23/2018

Presented by Marti Perhach, BS

Measurable Learning Objectives:
At the conclusion of this presentation, participants should be able to…
1. Recall the three distinct time periods in which GBS can infect babies
2. Discuss whether or not the term should include infections in babies born live, but likely infected prior to the mothers’ water breaking or labor starting

ABOUT THE PRESENTER:

Marti Perhach, BS
Marti Perhach cofounded Group B Strep International (GBSI) in 2006. Previously she had served as President for GBSI's sister organization, The Jesse Cause, since 1999. GBSI was cofounded to expand the scope and audience of the GBS awareness campaign. She also serves as GBSI’s CEO. Her background is Business Administration with a major in Hotel & Restaurant Management and a minor in Marketing from Cal Poly Pomona. Marti enjoys organizing conference exhibits to share information on how to help protect babies from group B strep disease. Marti's daughter, Rose, was stillborn in 1998 due to POGBSD.

Marti Perhach link

10/14/2018 01:28:12 pm

Welcome to the 1st Annual Virtual Symposium on Prenatal-onset Group B Strep Disease! I look forward to your comments and perspective on how you think prenatal-onset group B strep disease should be defined.

Kim Poulton link

10/15/2018 03:15:50 pm

Here in the UK prenatal-onset GBS is not a reocognised term, thus indicating that
GBS infection cannot happen before birth. As my daughter was stillborn at term plus 9 days and I was told those dreaded words "these things just happen" I would be keen for much more to be done in recognising POGBSD. Only when it is recognised can action be taken as to how and why these babies can become infection in uterine with intact membranes. It is my belief that sweeps/membrane stripping can cross intact membrane, but again here in the U.K. there is no evidence to suggest this and would be keen for more studies to be carried out. Thanks Marti, fab presntiaon x

Marti Perhach

10/15/2018 08:47:56 pm

Thanks, Kim! I agree -- recognition is the first step. We have over 200 people joining us for this symposium with more registering every day from all around the world. My hope is that the synergy of what each person learns and shares will spread recognition of POGBSD far and wide--for Faith and Rose and all of our babies.

Tracey Simpson

10/17/2018 04:14:11 am

I fully agree that it needs more recognition and more research because I am really finding it hard to believe the accuracy of the 'rareness'. Many people I've shared my story with have come back with it happening to them ranging from misscarage, to stillbirths. A few people I've spoken to have explained they didn't go ahead with autopsy and makes me wonder the actual statistics of how POGBSD cases. I've attempted to look for statistics on POGBSD but have come up with nothing.

My Dr also said to me that "These things happen and next time you'll get better treatment". Standardised testing from much earlier on, more frequently is needed. Particularly when there isn't many symptoms presented.

Thank you Marti for your presentation and to GBSI, it's been a great source for me dealing with my loss.

10/18/2018 08:45:50 pm

Glad if we could help in any way. Thank you for all of your support, Tracey.

It's always bothered me that GBS stillbirths and miscarriages are thought of as "rare" because, until recently, there hasn't been surveillance data to know if it is "rare" or not. GBS could possibly be the cause quite often. Part of the problem is that autopsies and other forms of pathology testing aren't generally encouraged because "they never find anything" which is incorrect (will have a presentation on that topic on Saturday) and, unfortunately, when a cause of death is found, fetal death certificates aren't routinely updated so EVEN if GBS is found to be the cause it doesn't always get counted.

Dr. McGregor and I got to speak with Dr. Bob Silver and Dr. JJ Erwich at the past two ISA/ISPID conferences about their work with the ICD-PM (International Classification of Diseases - Perinatal Mortality) for the World Health Organization. They have done a tremendous job in working towards a global standardization of causes of death and have included attendees at the ISA/ISPID conferences in working groups for input on ICD-PM including how to word the questions to help close the gaps in updating causes of death.

Would be glad for anyone’s input as to how to start having fetal death certificates be routinely updated with the final diagnosis.

10/18/2018 08:56:20 pm

Also, two recent studies have estimated GBS fetal infections/stillbirths. One estimates 57,000 (UR, 12,000 to 104,000) fetal infections/stillbirths worldwide (1) and the other estimates 0% to 12.1% of all stillbirths (2). According to the World Health Organization, "An estimated 2.6 million stillbirths occur annually."

Two of the authors from the 2nd study will be presenting this Saturday so there will be an opportunity to ask questions.

(1) https://academic.oup.com/cid/article/65/suppl_2/S200/4589594
(2) https://www.ncbi.nlm.nih.gov/pubmed/26177561

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