Tough Grandma (On Becoming a Grandmother in a Lyme-Endemic Family)
by Ginger Savely, RN, FNP-C
The phone rang early the
morning of October 4, 2006, and as I came out of my barely-conscious stupor,
I heard the exhausted but exhilarated voice of my eldest daughter softly
announce, “You're a grandma!” My first grandchild – a delicate little girl
with lots of dark hair, looking just like her mom did when I first held
her in my arms some 26 years earlier, marveling at her perfection and overwhelmed
by my love for her.
Many feelings run joyfully,
inquisitively, and apprehensively through the minds of new mothers and
grandmothers – the same thoughts, questions, and concerns that have passed
down through the ages as women relive the miracle and splendor of birth.
As I soaked up the reality of my new role and the new life that had blessed
us, I asked myself: Will my new granddaughter have my daughter's clever
wit and strength of mind? Her husband's ingenuity and athletic ability?
Will she bear resemblance to me in any way or will she inherit the strong
Irish genes of my daughter's father? Will she be calm or impatient? Serious
or jovial? Disciplined or free-spirited?
However, for our family,
and others like ours, a darker question looms forebodingly in the background.
Did the spirochete that causes Lyme disease, the corkscrew-shaped bacteria
that infects my daughter and many other members of our family, pass through
my daughter's placenta and into this innocent little baby's body, threatening
to catch her under-developed immune system off-guard and wreak havoc when
The Center for Disease Control
and Prevention (CDC) maintains that there is absolutely no risk of congenitally
transferring the borrelia spirochete that causes Lyme disease. Intuitively,
this is hard to believe, considering that a genetically much less sophisticated
spirochete, Treponema pallidium, the causative agent of syphilis, is well
known to pass from mother to child and cause potentially devastating consequences
for the infant.
Borrelia bacteria have been
isolated in both sperm and breast milk, and those of us who treat chronic
Lyme patients have suspected and clinically observed the congenital transfer
of the disease, over and over again. The results of congenital Lyme can
be mild to devastating: the bacteria may cause almost immediate, acute
damage or hide sequestered in the joints, heart, brain or other organs,
to appear later in life, when least expected, causing subtle and unsuspecting
problems like learning, social or developmental delays, all easily attributable
to other causes.
Two years ago, when precious
little Payton was born to one of my Lyme patients in Austin, Texas, I witnessed
the full potential fury of the bacteria's congenital transfer. Payton was
delivered by cesarean section due to a breech (feet first) presentation.
From all outward appearances he started life as a healthy little baby boy.
But the baby's maternal grandmother picked up on subtle cues that something
was not quite right. She alone noticed his unusual lethargy, decreased
muscle tone, and unwillingness to focus on faces or track moving objects.
On the nineteenth day of Payton’s life, he developed a fever and became
Following the pediatrician's
protocol, the young parents took their baby immediately to the emergency
room. After blood tests and imaging studies, the perplexed doctors were
unsure as to why the infant had begun to bleed into his brain, causing
him to take a sudden turn for the worse.
Various possibilities were
considered, including an arterial-venous malformation in the brain, a stroke,
an aneurysm, or possibly even infection. Payton’s grandmother suggested
the possibility of a congenital transfer of Lyme disease, since the infant's
mom had, by oversight, discontinued her Lyme treatment halfway through
The neurosurgeon, pediatric
neurologist, hospitalist, and pediatrician scoffed at the idea, informing
the baby's grandmother that this was unheard of and furthermore impossible.
Apparently they were not familiar with the highly regarded textbook, Infectious
Diseases of the Fetus and Newborn Infant, published by W.B. Saunders in
2001. An entire chapter of more than a hundred pages is devoted to congenital
Lyme disease. Written by the pediatric infectious disease specialist, Tessa
Gardner, MD, the book describes more than 250 such cases.
A temporary shunt was placed
to drain the excess fluid from Payton’s brain. The doctors had highly recommended
a permanent shunt, by now convinced of an irreversible condition. But,
with fierce tenacity, Payton’s grandmother had pushed for the temporary
shunt, unwilling to give up on the notion that a treatable infection, rather
than a congenital anomaly, was the culprit for the baby's brain bleed.
Her stubborn refusal to accept what the doctors were saying began to create
tension between her and her daughter, who was wearily resigned to Payton’s
fate and annoyed by her mother's persistence.
Payton’s prognosis was tenuous
as the stressful weeks dragged on. The specialists did all they could to
keep him alive, while debating the etiology of his condition and the prudent
way to proceed. The odds that little Payton would pull through this nightmare
were diminishing, and each night his young parents barely slept, fearful
that the night would be their baby's last.
the request of the grandmother, I consulted with Dr. Charles Ray Jones,
the nation's leading authority on pediatric Lyme disease, and was assured
that Payton’s predicament was a possible presentation for congenital Lyme.
Furthermore, he had seen two similar such cases himself, both having benefited
from positive outcomes after intravenous antibiotics were administered.
More determined than ever,
Payton’s grandmother insisted that the pediatric infectious disease doctor
on the case (the one doctor who was not openly antagonistic about the congenital
transfer idea) provide her with a test tube of spinal fluid drained from
the baby's shunt. Under my orders, she mailed it, along with the baby's
already-frozen cord blood, to IGeneX laboratories in Palo Alto, California,
for PCR (Polymerase Chain Reaction) testing.
The PCR test, which looks
for actual genetic material of the guilty spirochete, is highly specific
(if it's positive, you KNOW it's positive) but not very sensitive (it misses
many of the true positives). Dr. Jyotsna Shah, director of IGeneX Laboratories,
called me herself with the amazing news that both the spinal fluid and
cord blood were positive for borrelia by PCR. Meanwhile, as fate would
have it, soon before the test results arrived, the baby developed a staph
infection in the brain (a risk of the brain shunt) and was started on three
powerful intravenous antibiotics.
Payton’s grandmother informed
the hospital doctors of the positive Lyme tests, but by now the baby's
miraculous transformation spoke for itself. Within less than twelve hours
of the administration of the IV antibiotics, it was evident that the antibiotics
were treating more than the newly acquired staph infection.
The baby's initial neurological
symptoms cleared. He became alert and responsive with good muscle tone
and eye contact. He began to thrive, ready to get on with life as if the
previous six weeks had been nothing more than a nightmare. The doctors
were bewildered and amazed, having never witnessed such a dramatic transformation
in a severely ill newborn.
Reluctantly, a few of the
doctors admitted that the borrelia infection was probably the cause of
Payton’s near death experience, and that the presence of the bacteria in
the cord blood and placenta could only have occurred due to congenital
transfer. Apologetic that they had dismissed the grandmother's pleas, these
doctors still maintained that this was a “one in a million” case, an event
unlikely to be witnessed more than once in a physician's career. Little
did they know that those of us who have treated hundreds of Lyme patients
witness congenital transfer cases (although perhaps not as dramatic as
this one) every day.
That was one tough grandma!
Lucky for little Payton, now a healthy, happy two-year old, his grandma
was intelligent and intuitive and wouldn't take no for an answer. It takes
guts to stand up to an entourage of condescending specialists who represent
the conservative doctrinism of the medical establishment! Despite this
one, almost-devastating outcome, I have seen many other “Lyme moms” deliver
perfectly healthy babies who test negative by PCR at birth and are thriving
and developing normally. These moms stayed on antibiotics throughout the
pregnancy and were able to tolerate the pregnancy and childbirth remarkably
Many Lyme moms, in fact,
report feeling better than ever during pregnancy, a phenomenon probably
related to the high level of natural killer cells and suppression of inflammation
necessary for the body not to reject the pregnancy. The stress of the birth
itself, lack of sleep, and rapid hormone decline after the birth can, however,
cause Lyme symptoms to flare. Therefore, keeping the mom from “crashing”
after childbirth is the main challenge with the childbearing experience
for the Lyme mom.
Pregnant women who harbor
the Lyme spirochete should consider doing what my daughter did: take baby-friendly
antibiotics throughout the pregnancy, arrive at the hospital with IGeneX
laboratory test kit in tow, and request collection of cord blood and placental
tissue immediately following the birth, to send for PCR testing. Although
the test often yields false negative results, a positive test allows for
immediate treatment of the infection (providing, of course, a willing collaborating
pediatrician can be found).
We do not yet know the results
of my new granddaughter's Lyme tests. Even if they are positive, she will
be in good company in our family, as many of us deal with some degree of
the illness every day. But she is a beautiful little girl, perfect in every
way, and we will raise her and love her and, if it comes down to it, teach
her to cope with the aches and pains and inconveniences of the family “curse”.
Because even if she tests positive for the Lyme bacteria, things could
be so much worse. She has all of her fingers and all of her toes. She has
her mama's beautiful dark hair and her daddy's intense blue eyes. She has
dozens of doting family members surrounding her with their love. And she's
got one tough grandma who will stand up for her and take care of her no
matter what challenges may come her way.
Post note: Payton’s grandma
Laura Barton. She is not only one tough grandma, but also an amazingly
warm and generous woman and an irreplaceable friend."