Lyme Disease and Pregnancy
The multi-faceted, complex issue of Lyme disease and pregnancy, maternal-fetal transmission of the Lyme disease causing spirochete Borrelia burgdorferi, and congenital Lyme (a baby infected with the bacteria that causes Lyme disease at birth) is one of great importance to those who have been impacted and to medical providers who provide support and care to their patients.
We trust that providing you with this fact-based information will open and bridge new conversations on this issue. We will be updating this page with new information, research opportunities and resources as it becomes available.
The Lyme disease spirochete, Borrelia burgdorferi, can be transmitted from a pregnant mother, across the placenta, to her baby in the womb. This has been historically reported by the US Centers for Disease Control (CDC), National Institutes of Health (NIH), World Health Organization (WHO) and Canadian Federal Health Authorities.
The US CDC and Health Canada currently acknowledge the risk of maternal-fetal transmission of Lyme disease on their respective websites.
In a July 4, 1989 article (1) in the New York Times titled Medical Science Steps Up its Assault on Lyme Disease, Dr. David Axelrod, the New York State Health Commissioner at the time was interviewed and quoted. When asked about Lyme and pregnancy, he stated this:
"We do know that the Lyme bacterium crosses the placenta. Most babies born of mothers with treated Lyme disease have been healthy, yet the long-term impact of this disease on the developing fetus and newborn is not entirely clear."
We trust that providing you with this fact-based information will open and bridge new conversations on this issue. We will be updating this page with new information, research opportunities and resources as it becomes available.
The Lyme disease spirochete, Borrelia burgdorferi, can be transmitted from a pregnant mother, across the placenta, to her baby in the womb. This has been historically reported by the US Centers for Disease Control (CDC), National Institutes of Health (NIH), World Health Organization (WHO) and Canadian Federal Health Authorities.
The US CDC and Health Canada currently acknowledge the risk of maternal-fetal transmission of Lyme disease on their respective websites.
In a July 4, 1989 article (1) in the New York Times titled Medical Science Steps Up its Assault on Lyme Disease, Dr. David Axelrod, the New York State Health Commissioner at the time was interviewed and quoted. When asked about Lyme and pregnancy, he stated this:
"We do know that the Lyme bacterium crosses the placenta. Most babies born of mothers with treated Lyme disease have been healthy, yet the long-term impact of this disease on the developing fetus and newborn is not entirely clear."
Dr. Axelrod’s quote from over 30 years ago rings true today. We do know that the Lyme disease causing spirochete can cross the placenta and infect a fetus/baby, this has been acknowledged by many experts in the field. Significant knowledge gaps remain regarding how Lyme disease impacts pregnancy and furthermore, very little information exists on the potential for long-term health impacts of babies born to mothers with gestational Lyme. Ultimately, collaborative, multi-sectoral research on this issue will open new doors for better diagnostics, treatment, healthcare professional education and resources, and support for families and children impacted
A 1991 committee opinion (3) by The American College of Obstetricians and Gynecologists (ACOG) acknowledges spirochetes can cross the placenta with resultant stillbirth. The UK Royal Society of Obstetricians and Gynecologists (4) has listed Lyme disease as one of the infectious organisms which can cross the placenta leading to late intrauterine fetal death and stillbirth. Expert reviews (5-9) on stillbirth in the American Journal of Obstetrics and Gynecology, Obstetrical and Gynecological Survey, Seminars in Fetal and Neonatal Medicine, and the Lancet have identified Borrelia burgdorferi as being either associated with, or etiologic for stillbirth.
The current (8th) edition of Remington and Klein Infectious Diseases of the Fetus and Newborn Infant, a reference medical textbook, lists Lyme disease as one of the microorganisms known to cross the placenta, resulting in congenital infection. (10)
A paper published on the histopathology of Lyme borreliosis (10) states, ‘Uterine involvement in stage II Lyme borreliosis is a significant factor in pregnancy since it may result in transplacental transmission of B. burgdorferi to the fetus. One of us has recently encountered cases of decidual necrosis with inflammation in patients with intrauterine infection due to B. burgdorferi (de Koning, unpublished data).’
Overview of Cases:
Cases of miscarriage, stillbirth, neonatal death and babies/children with congenital Lyme infection have been reported including cases whereby the pregnant mother was bitten by a tick and didn’t receive medical treatment, cases of pregnant women with late-stage Lyme, and cases of subclinical or asymptomatic infection (where the pregnant mother had no recall of a tick-bite or erythema migrans rash in pregnancy).
Healthy Babies and Pregnancy Outcomes:
There have also been many cases reported with good pregnancy outcomes and healthy infants born to mothers with treated Lyme disease.
Adverse Outcomes in Pregnancy
A wide range of fetal or neonatal adverse outcomes have been documented with Lyme and Pregnancy. In many cases it wasn’t proven that these outcomes were directly caused by the Lyme bacteria. More research is needed to see if there is a definitive link between some of these adverse pregnancy outcomes and gestational Lyme infection.
Some of the adverse outcomes reported include:
Clinical manifestations reported in the newborn include:
Treatment in Pregnancy: Prompt diagnosis and treatment of Lyme disease in pregnancy is associated with good pregnancy outcomes. There have been a few cases whereby Lyme bacteria was identified in placenta or in fetal tissue, or other adverse outcomes were noted despite antibiotic treatment in the mother. Currently there are differing medical opinions regarding the length and type treatment for Lyme in pregnancy ranging from oral antibiotics to IV antibiotics. (Citations 74-82)
A meta-analysis performed in a recent systematic review by Waddell et al identified treated Lyme in pregnancy is associated with fewer adverse outcomes (11%, 95%CI 7–16) versus untreated (50%, 95%CI 30–70). A study by Lakos et al reviewed data from 95 women with Lyme borreliosis during pregnancy over a 22 year span. Adverse outcomes were identified in 12.1% of parentally treated women, 31.6% of orally treated women and 60% of untreated women, thus drawing attention to a significantly higher rate of adverse pregnancy outcomes in untreated cases.
Treatment Guidelines for Lyme and Pregnancy and Congenital Lyme Infection:
Many health care professionals (including primary-care practitioners and OB-GYNs) may not be aware that this alternate mode of transmission is even possible. Pregnant women with Lyme (or those desiring to become pregnant) may have to advocate for assessment, treatment and monitoring of themselves and their baby after birth.
Standardized clinical guidelines providing recommendations for diagnosis, treatment and follow-up of Lyme borreliosis for both mother and exposed fetus/infant have never been created. Other zoonotic infectious diseases such as Zika, Chagas disease and West Nile Virus do have these guidelines.
Interim guidelines could be developed based on evidence available to date and be updated as new research findings are reported. Without clear guidance, practitioners/clinicians may be uncertain of how to manage cases of gestational and congenital Lyme disease, which may lead to misdiagnosis or inadequate management.
A standardized assessment tool to guide clinical evaluation, treatment/management and follow-up of infants born to mothers with Lyme during pregnancy could include:
Overview of Cases:
Cases of miscarriage, stillbirth, neonatal death and babies/children with congenital Lyme infection have been reported including cases whereby the pregnant mother was bitten by a tick and didn’t receive medical treatment, cases of pregnant women with late-stage Lyme, and cases of subclinical or asymptomatic infection (where the pregnant mother had no recall of a tick-bite or erythema migrans rash in pregnancy).
Healthy Babies and Pregnancy Outcomes:
There have also been many cases reported with good pregnancy outcomes and healthy infants born to mothers with treated Lyme disease.
Adverse Outcomes in Pregnancy
A wide range of fetal or neonatal adverse outcomes have been documented with Lyme and Pregnancy. In many cases it wasn’t proven that these outcomes were directly caused by the Lyme bacteria. More research is needed to see if there is a definitive link between some of these adverse pregnancy outcomes and gestational Lyme infection.
Some of the adverse outcomes reported include:
- spontaneous miscarriage and stillbirth
- premature delivery
- early neonatal death
- intrauterine growth restriction
Clinical manifestations reported in the newborn include:
- respiratory distress and neonatal sepsis
- low birth weight and hyperbilirubinemia (jaundice)
- hypotonia (poor muscle tone)
- neurologic abnormalities including hydrocephalus, neurologic dysfunction and developmental delay
- dental anomalies including hypoplastic enamel
- cardiac malformation and myocardial dysfunction
- genitourinary (urinary tract) abnormalities
- ocular (eye) manifestations including cortical blindness
- dermatological (skin) manifestations including cavernous hemangioma, newborn rash
- orthopedic (bone) abnormalities including clubfoot, joint contractures, syndactyly, and transverse metaphyseal bands seen on x-ray.
Treatment in Pregnancy: Prompt diagnosis and treatment of Lyme disease in pregnancy is associated with good pregnancy outcomes. There have been a few cases whereby Lyme bacteria was identified in placenta or in fetal tissue, or other adverse outcomes were noted despite antibiotic treatment in the mother. Currently there are differing medical opinions regarding the length and type treatment for Lyme in pregnancy ranging from oral antibiotics to IV antibiotics. (Citations 74-82)
A meta-analysis performed in a recent systematic review by Waddell et al identified treated Lyme in pregnancy is associated with fewer adverse outcomes (11%, 95%CI 7–16) versus untreated (50%, 95%CI 30–70). A study by Lakos et al reviewed data from 95 women with Lyme borreliosis during pregnancy over a 22 year span. Adverse outcomes were identified in 12.1% of parentally treated women, 31.6% of orally treated women and 60% of untreated women, thus drawing attention to a significantly higher rate of adverse pregnancy outcomes in untreated cases.
Treatment Guidelines for Lyme and Pregnancy and Congenital Lyme Infection:
Many health care professionals (including primary-care practitioners and OB-GYNs) may not be aware that this alternate mode of transmission is even possible. Pregnant women with Lyme (or those desiring to become pregnant) may have to advocate for assessment, treatment and monitoring of themselves and their baby after birth.
Standardized clinical guidelines providing recommendations for diagnosis, treatment and follow-up of Lyme borreliosis for both mother and exposed fetus/infant have never been created. Other zoonotic infectious diseases such as Zika, Chagas disease and West Nile Virus do have these guidelines.
Interim guidelines could be developed based on evidence available to date and be updated as new research findings are reported. Without clear guidance, practitioners/clinicians may be uncertain of how to manage cases of gestational and congenital Lyme disease, which may lead to misdiagnosis or inadequate management.
A standardized assessment tool to guide clinical evaluation, treatment/management and follow-up of infants born to mothers with Lyme during pregnancy could include:
- Laboratory testing guidance
- Clinical Assessment Tools
- Treatment recommendations
- Recommendations for subspecialty consultation and support (cardiology, neurology, ophthalmology etc.)
- Recommendations for histological examination/ testing of placenta, umbilical cord tissue
Breastfeeding: There is no direct evidence that nursing mothers infected with Lyme disease can transmit infection through their milk. Borrelia burgdorferi DNA has been identified by PCR in breastmilk from two lactating mothers. According to some experts, although transmission via breastmilk has not been reported, it cannot be excluded. Citations 83-85.
Prospective Studies Needed!
Mother to baby transmission of Lyme disease is vastly understudied. Many past researchers and investigators have highlighted the necessity and importance of large-scale prospective studies following mothers with Lyme and their babies over prolonged period as a critical next step.
According to one group of experts: "Although the potential for B. burgdorferi to cause congenital disease has clearly been established, the frequency of transmission is not known. Furthermore, because of the chronic persistence of the organism in the untreated patient, it is not known whether patients who were infected prior to pregnancy can transmit the infection to the fetus. The answers to these questions will require large scale prospective studies. Analysis of case reports and small studies offers us a perspective and some tentative guidelines for the diagnosis and treatment of this infection during pregnancy."
Mother to baby transmission of Lyme disease is vastly understudied. Many past researchers and investigators have highlighted the necessity and importance of large-scale prospective studies following mothers with Lyme and their babies over prolonged period as a critical next step.
According to one group of experts: "Although the potential for B. burgdorferi to cause congenital disease has clearly been established, the frequency of transmission is not known. Furthermore, because of the chronic persistence of the organism in the untreated patient, it is not known whether patients who were infected prior to pregnancy can transmit the infection to the fetus. The answers to these questions will require large scale prospective studies. Analysis of case reports and small studies offers us a perspective and some tentative guidelines for the diagnosis and treatment of this infection during pregnancy."
A pioneering research study: led by Dr. Liz Darling and team from McMaster University Midwifery Research Centre and collaborators titled Lyme borreliosis in pregnancy and associations with parent and offspring health outcomes: An international cross-sectional survey has been published and also calls for prospective studies.
From the paper: 'overall, this pioneering survey represents significant progress toward understanding the effects of LD on pregnancy and child health. A large prospective study of pregnant people with LD, combining consistent diagnostic testing, exhaustive assessment of fetal/newborn samples, and long-term offspring follow-up, is warranted.' A brief overview of this study can be found here:
From the paper: 'overall, this pioneering survey represents significant progress toward understanding the effects of LD on pregnancy and child health. A large prospective study of pregnant people with LD, combining consistent diagnostic testing, exhaustive assessment of fetal/newborn samples, and long-term offspring follow-up, is warranted.' A brief overview of this study can be found here:
Lyme Disease and Pregnancy: State of the Science & Opportunities for Research
An April 2021 webinar on Lyme and Pregnancy highlights important questions, research gaps and opportunities related to this subject matter. LymeHope has compiled a supplementary document to accompany our presentation for the webinar.
An April 2021 webinar on Lyme and Pregnancy highlights important questions, research gaps and opportunities related to this subject matter. LymeHope has compiled a supplementary document to accompany our presentation for the webinar.
Patient Voice: A collective patient and advocacy voice, combined with opportunities within Academia and Government for research collaboration is making a difference.
Support for families: Mothers Against Lyme is an organization started by a group of mothers, and mother-advocates, concerned about the impact of Lyme Disease and its co-infections on pregnant women, children and families.
Their focus includes awareness, education, advocacy and community building, as they promote research that advances diagnosis, treatment and prevention. They have started a virtual 'meet-up' support group for parents who have children with Lyme disease in collaboration with Project Lyme. If you are interested in participating in the 'meet-up' or receiving newsletters, you can sign up on the Mothers Against Lyme website, through their 'Join Us' button.
Their focus includes awareness, education, advocacy and community building, as they promote research that advances diagnosis, treatment and prevention. They have started a virtual 'meet-up' support group for parents who have children with Lyme disease in collaboration with Project Lyme. If you are interested in participating in the 'meet-up' or receiving newsletters, you can sign up on the Mothers Against Lyme website, through their 'Join Us' button.
In Canada, CTV National News featured a national television news story on mothers concerned about congenital Lyme disease.
The LymeLight Foundation has compiled videos sharing stories of families impacted by congenital Lyme disease which can be accessed from their website. They also have resources specific to Lyme disease and Pregnancy.
US Tickborne Disease Working Group:
A 202o US Tick-Borne Disease Working Group Report to Congress identified in Recommendation 8.3 ‘Further evaluation of non-tick bite transmission of Lyme disease, for example maternal-fetal transmission.’ The report also states, ‘Similarly, additional studies of potential congenital Lyme disease, and of persistent Lyme disease in undiagnosed and untreated infants resulting from maternal transmission of B. burgdorferi, could be helpful, as could patient registries.’
A 2022 Pathogenesis and Clinical Presentation subcommittee report to the Tick-borne Disease Working Group addressed Lyme and Pregnancy as one of several priorities (Priority 4) and provides an in-depth overview of the issue in their report including research gaps, opportunities and possible recommendations.
A 202o US Tick-Borne Disease Working Group Report to Congress identified in Recommendation 8.3 ‘Further evaluation of non-tick bite transmission of Lyme disease, for example maternal-fetal transmission.’ The report also states, ‘Similarly, additional studies of potential congenital Lyme disease, and of persistent Lyme disease in undiagnosed and untreated infants resulting from maternal transmission of B. burgdorferi, could be helpful, as could patient registries.’
A 2022 Pathogenesis and Clinical Presentation subcommittee report to the Tick-borne Disease Working Group addressed Lyme and Pregnancy as one of several priorities (Priority 4) and provides an in-depth overview of the issue in their report including research gaps, opportunities and possible recommendations.
LymeX Roundtable Summary Report, 2021. In a recent summary report from a LymeX Roundtable, 'Bridging the Trust Gap' in the 'Policy Issues and Opportunities' section, participants identified the necessity for interim guidelines for Lyme and Pregnancy. In a section on 'Education' it was identified that CME courses could focus on gestational and congenital Lyme among other topics.
Banbury Meeting on Perinatal Transmission of Lyme disease. A 2022 Banbury Meeting (scientific think-tank) on Perinatal Transmission of of Lyme disease brought together scientists/researcher, clinicians, US Federal government representatives and leaders from Lyme disease organizations to examine the issue and identify new research opportunities.
Research and Knowledge Gaps:
Significant knowledge gaps remain regarding how Lyme disease impacts pregnancy in cases of acute versus chronic or subclinical illness, including best diagnostic approaches to identifying infection in both mother and baby, best treatment approaches in a pregnant woman or in an infant who is symptomatic at birth.
Questions remain as how to identify a pregnant woman who may be infected but does not recall a tick-bite or EM rash, or the possibility of a latent or subclinical infection. Very little information exists on the potential for long-term health impacts of babies born to mothers with gestational Lyme. Clearly, the prevalence, incidence, clinical spectrum and potential long-term health consequences of infants exposed to Lyme in-utero must be further examined. Maternal-fetal transmission of Lyme disease need to be communicated as a significant research priority so that research institutions and investigators submit grant proposals. Appropriation of funds to conduct multi-faceted research related to vertical transmission of Lyme disease needs to be prioritized.
Significant knowledge gaps remain regarding how Lyme disease impacts pregnancy in cases of acute versus chronic or subclinical illness, including best diagnostic approaches to identifying infection in both mother and baby, best treatment approaches in a pregnant woman or in an infant who is symptomatic at birth.
Questions remain as how to identify a pregnant woman who may be infected but does not recall a tick-bite or EM rash, or the possibility of a latent or subclinical infection. Very little information exists on the potential for long-term health impacts of babies born to mothers with gestational Lyme. Clearly, the prevalence, incidence, clinical spectrum and potential long-term health consequences of infants exposed to Lyme in-utero must be further examined. Maternal-fetal transmission of Lyme disease need to be communicated as a significant research priority so that research institutions and investigators submit grant proposals. Appropriation of funds to conduct multi-faceted research related to vertical transmission of Lyme disease needs to be prioritized.
Next Steps:
Collaboration and innovation is required to investigate the complexities of Lyme and pregnancy, maternal-fetal transmission and congenital Lyme infection. State of the art science is required to investigate the research gaps and complexities of this alternate mode of transmission and will require a collaborative multi-disciplinary multi-stakeholder ‘relay-team’ approach, which values an integrative model of bringing together patients with lived experience, front-line clinicians, clinical researchers, and scientists to collectively identify, propose and carry out further investigation.
Collaboration and innovation is required to investigate the complexities of Lyme and pregnancy, maternal-fetal transmission and congenital Lyme infection. State of the art science is required to investigate the research gaps and complexities of this alternate mode of transmission and will require a collaborative multi-disciplinary multi-stakeholder ‘relay-team’ approach, which values an integrative model of bringing together patients with lived experience, front-line clinicians, clinical researchers, and scientists to collectively identify, propose and carry out further investigation.
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