Dear HIFA colleagues,
I am forwarding the message below from our sister forum CHIFA. www.hifa.org/joinchifa
We are grateful to Kelli and Kevin Smith for sponsoring this Spotlight on Group B Strep, and for sharing their personal story.
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Good morning,
Below is our story about our daughter Finley Genevieve. We are so grateful to be a part of this international discussion/forum. We truly hope her story and many others educate and begin conversations that eventually may lead into change and a cure for group b strep.
In September 2017, our daughter, Finley Genevieve, died just 18 hours after she was born from early-onset Group B Streptococcal (GBS) disease.
Like many expectant mothers, I was screened for GBS at 36 weeks of pregnancy. My test result was negative, and I believed that meant my baby was protected. What I did not know was that GBS colonization can change between screening and delivery. I was induced at 39 weeks, and sometime during those three weeks, Finley became infected.
When she was born, she appeared healthy. There were no obvious signs that she was critically ill.
About eight hours after birth, she became unusually fussy. Her temperature was low, and her blood pressure was abnormal. She was taken from us for monitoring, and we were reassured that everything would likely be fine. As her condition changed, a respiratory therapist evaluated her and felt that her breathing difficulties could simply be part of a normal transition after birth. We now know these were early signs of invasive GBS disease.
When we saw Finley around noon, she was in an incubator connected to monitors measuring her temperature, blood pressure, and breathing. We were still being reassured. When she heard our voices, she opened her eyes, looked at us, and for a brief moment her vital signs seemed to stabilize. We held onto hope.
Less than two hours later, I held my daughter in my arms as she was baptized and took her final breath.
By then, the infection had spread throughout her tiny body. Although antibiotics had been ordered that morning, they were not administered until approximately three hours later. Tragically, by that point the disease had progressed beyond what medicine could reverse.
Finley’s story is not shared to assign blame. It is shared because awareness saves lives.
A negative prenatal GBS screening result does not eliminate the possibility of early-onset GBS disease. Newborns can deteriorate with extraordinary speed, and subtle symptoms such as poor temperature regulation, respiratory changes, feeding difficulties, or unusual fussiness deserve urgent evaluation. Rapid recognition, timely assessment, and prompt treatment are critical.
Since losing Finley, my family has dedicated ourselves to raising awareness and advocating for better education about Group B Strep. If sharing her story helps even one healthcare professional recognize the warning signs sooner, encourages one parent to speak up when something doesn’t seem right, or contributes to improving policies that protect newborns, then her life continues to make a difference.
From July 8 through July 14, we are honored to sponsor a global discussion on Group B Streptococcus through CHIFA/HIFA (Health Information For All). We hope healthcare professionals, researchers, policymakers, advocates, and families from around the world will join this important conversation as we work together toward a future where no family loses a child to a preventable or treatable infection.
Finley’s life was only one day long, but her legacy is helping to create conversations that can save countless others.
Thank you,
Kelli Smith
CHIFA profile: Kelli Smith is a stay-at-home mother based in the United States. kelliray13 AT gmail.com
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COMMENT (NPW): As Kelli says: awareness saves lives. I invite HIFA members to join CHIFA for a few days (8-14 July) to follow and contribute to this important discussion: www.hifa.org/joinchifa More information is available on our landing page www.hifa.org/gbs
Best wishes, Neil
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org