Its Time to Recognize Congenital Lyme
Updated: May 11, 2021
Being a doctor who works with children, the idea of maternal-fetal transmission of Lyme or any other tick-borne illness is very disturbing. There has been a lot of denial about this issue in the medical literature, but in 2020 the Centers for Disease Control and Prevention acknowledged that congenital transmission is possible but “rare.” Personally, I find it very hard to accept that maternal-fetal Lyme transmission is an unusual occurrence. I’ve diagnosed at least five cases of probable congenital Lyme while evaluating a child for possible psychiatric illness. On only one occasion was the mother aware of the possible diagnosis of congenital Lyme prior to our initial meeting.
What made me even suspect maternal-fetal transmission of Lyme? A few things. Most of the families I see live in New Jersey, a Lyme endemic state. Often there is a history of family trips to Long Island or Nantucket – both areas known to be densely populated with infected ticks. So I realize that I have to keep Lyme disease on my radar. Another potential clue is if the mother has a history of nonspecific symptoms which were thought to be neurological (e.g. multiple sclerosis), autoimmune (e.g. early systemic lupus erythematosus, rheumatoid arthritis), or perhaps attributed to fibromyalgia. Her past medical work up, which was often extensive, uncovered no clearly identifiable illness only hints of abnormalities such as nonspecific markers of inflammation are found. I’ve also seen mothers, who were diagnosed with Lyme when they were younger, treated with antibiotics for a few weeks and subsequently declared “cured.” When questioned during the evaluation process, the mom DOES acknowledge experiencing cognitive symptoms such as trouble focusing or memory issues over the last few years (and she’s only in her 30s, 40s or early 50s.) Or perhaps upon further exploration she has had joint pains which were attributed to her frequent tennis playing or other physical activity.
Then there is the child’s early history and development to consider. Thorough studies following fetal development from pregnancy until years after their birth are needed to understand what happens during probable transmission of Lyme disease from mother to fetus. Dr. Charles Ray Jones, a pediatric Lyme specialist and his colleagues reviewed 102 cases of gestational Lyme and found a variety of possible outcomes of having the disorder during fetal development (Lyme Times 2005). The following information is taken from their study.
Frequency of Gestational Lyme Symptoms in Children
80% Cognitive problems, learning disabilities and/or mood swings
72% Fatigue and lack of stamina
60% Low grade fevers, pale coloring and/or dark circles under their eyes
50% Arthritis and/or painful joints
45% Different rashes which were not usually associated with Lyme
40% Gastroesophageal reflux with vomiting and/or coughing
40% Frequent upper respiratory tract infections and/or ear infections
40% Noise, light and/or skin sensitivity 30% Cavernous hemangiomas
30% Variety of Eye problems: posterior cataracts, myopia, astigmatism, conjunctival erythema (Lyme eyes), optic nerve atrophy and optic neuritis and/or uveitis
23% Secondary rashes
20% Abdominal pain
18% Developmental delay, including language, speech problems and/or poor muscle tone
Of note ,Dr. Jones found that “most of the children with gestational Lyme had manifestations of the disease at, or shortly after, birth.”
Also noted in the Jones study, and another clue for me when considering the possibility of gestational Lyme, is the presentation of a child who has had multiple difficulties in different systems of the body which required evaluation by various specialists.
There hasn’t been any new research in the United States to progress the understanding of congenital Lyme disease since 1995. In the classic medical text, Infectious Diseases of the Fetus & Newborn Infant, 4th ed, published in 1995, the 81-page chapter on Lyme disease was written by Dr. Tessa Gardner. As is true in important medical texts, revisions are made every few years to keep up with advances in the field. Different authors were responsible for the most recent updated 7th edition, published in 2011. This is not unusual in an update. What is striking in the new chapter, written by Drs. Eugene D. Shapiro and Michael A. Gerber, is that the number of pages on Lyme disease was decreased to 13, including references. When, or even how, did the medical community’s knowledge shrink over 16 years, and to such an incredible degree that 84% of the information disappeared between the two editions? One does have to wonder what the back-story is to this dramatic change.
We know that testing for Lyme disease often results in false negatives. Testing for Lyme during pregnancy is more likely to result in a negative finding because of a variety of immune and hormone changes that occur during gestation. Moms who have been ill with Lyme and/or other tick-borne illnesses while pregnant, often describe feeling less physically affected by the infection(s)’ associated aches and pains.
The few studies that are in the literature indicate that treatment of the maternal Lyme infection can result in a better outcome for both the mother and child. Sadly, again much more research is needed to determine what the effects are on the fetus when onset of infection occurs during the first, second or third trimester. The vulnerability of the fetus must be considered at its different stages of development. Another important question is what is the best way to treat Lyme during each trimester of pregnancy? Researchers must also consider the possible emergence of tick-related issues as the child ages. The few current studies on congenital Lyme only follow the child for a year or two and therefore very possibly missing important later manifestations involving cognitive and learning skills.
The following is a case history of an almost 3 ¾ year-old boy whom I saw in consultation.
Mark (not his real name) came in with his mother at the recommendation of his pediatric neurologist because he had been oppositional, intensely irritable, and was complaining of back and leg pain for over a year. His neurologic evaluation, including MRIs, was normal.
Mark was the product of a full-term pregnancy and delivered to a first-time mother with a history of ulcerative colitis. He was the product of a C section as his head was deemed too large to fit through the birth canal. His birth weight and height (length) were normal. But very quickly medical issues emerged. Mark was born with a large tongue (macroglossia) as well as oral hypotonia (poor muscle tone). He had problems swallowing and required feeding therapy. He was also found to be allergic to different formulas and it took a while to find a well-tolerated source of nutrition. In addition his pediatrician diagnosed him with gastroesophageal reflux disorder (GERD). Early on, Mark had multiple ear infections resulting in tubes placed in both ears when he was five months old. Because of recurrent nose and throat infections, his adenoids were removed when he was a year old. He had multiple episodes of croup, was diagnosed with reactive airway disease and followed by a pediatric pulmonologist. At 18 months, he was evaluated by an orthopedist due to toe walking, but no pathology was found. At age two, Mark developed a heightened sensitivity to sound and touch. He always had problems staying asleep at night and started snoring, so a sleep study was done which also didn’t show anything problems.
There were some speech and motor delays and Mark was diagnosed as having a mild, global early developmental delay, which basically meant that he was taking longer than other children his age to his milestones in more than one area. He received early intervention services including speech and occupational therapy. When he was 2 years old, because he was overactive and had difficulty paying attention, a developmental pediatrician diagnosed him with possible ADHD-combined type.
Before he was three, Mark had begun complaining of pain in his back and legs which was attributed to “growing pains.” He began falling at times and a cause couldn’t be determined by either an orthopedist or neurologist.
In summary, before age 4, Mark had seen multiple medical specialists, including: a pediatric gastroenterologist, a pediatric pulmonologist, two ENTs, a geneticist, both a pediatric orthopedist and neurologist, plus was seen at specialty clinics in two well-known teaching hospitals. He was enrolled in ongoing follow-up at a local child development center. He made 57 sick visits to his pediatrician in under four years and only a few were for treatment of minor childhood injuries. Clearly, this poor child was frequently ill!
As noted earlier, Mark was referred to me for a child psychiatric evaluation because of his irritability and oppositional behavior. In a review of his history, I learned that his mother became ill during her second trimester of the pregnancy.. She developed a fever, flu-like symptoms including vomiting, body aches and her internist noted mild right foot swelling. Bloodwork was positive for a diagnosis of Lyme disease and the mother was placed on two weeks of antibiotics. Subsequently after she finished the antibiotic course (and off antibiotics for 2 weeks) she saw her obstetrician who added another 10 days of treatment in the hopes of giving her better coverage. She experienced no further symptoms and felt well for the remainder of the pregnancy.
Looking through the child’s extensive medical testing, his only test for Lyme disease was a specialized test called a C6 peptide ELISA test done when he was 2 ½ and it was negative. Now I understood why this poor child had been so ill. My heart broke when I realized that the likely reason Mark couldn’t sleep through the night was due to being overwhelmed by aches and pains. Because of his speech delay, he was unable to communicate the reason for his discomfort.
I referred him to a pediatrician knowledgeable about Lyme disease given my preliminary diagnosis. Upon more detailed blood testing, Mark was found to be positive for Lyme as well as Babesia and Bartonella. He was subsequently treated with antibiotics which helped him become much less moody and irritable. He showed mild improvement in ability to focus and experienced a significant lessening of his various aches and pains.
Sadly, stories like Mark’s are far from “rare.” I strongly believe that a significant number of children have suffered and continue to suffer unnecessarily because of the medical field’s denial of mother-fetus transmission of Lyme disease. Clearly, much more research is needed. To continue to stand by and do nothing while countless mothers-to-be unknowingly pass along a potentially devastating infection to their unborn child, is unconscionable!