Phyllis Bedford, Co-founder and Executive Director of LymeLight Foundation, delivered the following public comment at the Tick-Borne Diseases & Associated Illnesses: National Community Engagement Initiative public meeting in San Francisco on June 11.

LymeLight Foundation is a national nonprofit dedicated to providing medical treatment grants of up to $10,000 to children and young adults through age 25. We are the largest Lyme foundation with treatment grants as its main mission. Since our inception in 2011, we have given 9.8 million dollars to 1385 individuals in 49 states.

There are so many things I could share about our population but today I want to focus on congenital Lyme or vertical (mother to baby) transmission of Lyme disease.

We estimate that 50 percent, or 700 of our grant recipients, were born with Lyme disease. How did we determine this? We looked through three years of recipient’s applications and determined which recipients fit a clinical picture of congenital Lyme. All of these children did not have a bull’s-eye rash and all of them had one or more family member also diagnosed with Lyme disease and many of them had a doctor’s letter stating a congenital Lyme diagnosis.

We hear from mothers who have Lyme disease with an ill child that they are devastated when a doctor tells them it was possible that they passed Lyme to their child. We have gotten to know families who believe Lyme disease was passed down through as many as four generations

Many other infections are known to be transmitted in utero: West Nile, Zika virus, syphilis and Chagas disease. These diseases have diagnostic and treatment guidelines to address pregnancy and congenital infection, yet, for Lyme disease, the number one vector-borne disease in the United States and Europe, the same is not true and the physicians are left without tools to help, and impacted families face significant barriers to access to care.

Although the CDC and NIH recognize that the Lyme bacteria can be transmitted across the placenta and lead to congenital infection, many if not most, healthcare professionals—including pediatricians and OB/GYNs—are completely unaware that vertical transmission of Lyme is possible. This lack of awareness and education leads to significant delay in diagnosis and treatment resulting in considerable suffering.

Children with congenital Lyme disease may manifest different symptomology than what is considered “typical” Lyme disease. We often see that children born with Lyme have developmental delays and cognitive and psychiatric complications of Lyme disease.

I am urgently advocating for evidence-based interim clinical guidelines for the diagnosis, treatment and clinical monitoring of pregnant mothers with Lyme disease, and their babies who may have been exposed to Lyme in-utero. This is desperately needed and should be prioritized.

I am honored to be the voice of 700 LymeLight children born with Lyme disease. Together, we shine a light on congenital Lyme, calling out for clinical recognition and research prioritization. The next generation of mothers and young children deserve our collective attention and collaborative solutions.

Click here to learn more about LymeLight Foundation.

The next application deadline for a Lymelight treatment grant is August 16, 2024. More info here.