[Neil asked: Please can you say a bit more about your work and especially about the challenge of meeting women's (and health workers') information needs?]
Thank you, Neil – glad to share about our work!
To help identify gaps in care and communication regarding GBS disease in babies, Group B Strep International is conducting the WAVES study survey of mothers worldwide, with and without a baby infected by group B strep (GBS). We encourage HIFA members to visit https://www.groupbstrepinternational.org/waves.html to take the survey, if applicable, and/or share with others.
The mother in our WAVES Study video you referenced had tested positive for GBS and received IV antibiotics. However, her daughter was born extremely sick via c-section as, according to her healthcare team, GBS had likely already passed through her intact membranes. They were all unaware that GBS could infect babies in this manner. Her baby was born and died 11 years ago this week, but we still hear from parents whose healthcare providers are unaware that GBS can cross intact membranes, potentially causing babies to be stillborn.
Unfortunately, there currently aren’t any official prevention strategies for GBS infection before birth. However, we advocate that pregnant individuals/parents and, of course, perinatal healthcare workers are adequately informed to be able to have important conversations about managing pregnancy care. Ideally, this would include recognizing and reacting to changes in fetal movement, informed consent about membrane stripping which may push GBS and other bacteria closer to the baby, as well as being informed about signs and symptoms of GBS infection in babies after birth. Everyone should be aware that GBS can infect babies up to several months of age from sources other than their mother.
To inform and enable these conversations, we have compiled downloadable resources at https://www.groupbstrepinternational.org/downloadable-gbs-awareness-mate... including GBS status cards and patient handouts with a checklist approach on how to help protect their baby from GBS. We also have resources at https://www.groupbstrepinternational.org/recognize-the-symptoms-of-infec... to help recognize the signs and symptoms of GBS infection in babies. These resources include audio clips of babies making the moaning/grunting sound that is a common, yet often unrecognized, sign of GBS meningitis and, very importantly, an excellent presentation by renowned pediatrician and GBS expert Dr. Carol J. Baker, providing parents with crucial information to help recognize the signs of GBS disease in their babies.
We advocate for closing the gaps in GBS care for ALL babies at ALL stages. Where adopted, current GBS disease prevention strategies only address GBS infections which present within 7 days after birth. GBS Research Connect https://www.gbsresearchconnect.org/ was recently launched to further GBS research and disease prevention in people of all ages as well as from a One Health perspective (https://www.groupbstrepinternational.org/one-health.html) and help in paving the way for a maternal vaccine for GBS to become widely available.
Looking forward to exploring possibilities for collaboration with you, too, and also with other HIFA members!
Best!
Marti
HIFA profile: Marti Perhach is CEO/Cofounder of Group B Strep International, United States. Professional interests: Group B strep disease research and prevention, prenatal infection, One Health. Email address: marti.perhach AT gbs-intl.org
