A Breastfeeding Story: Breastfeeding through Infant Botulism

By Corby Selzer

Five years (accumulative) of nursing and many years of counseling women on a variety
of breastfeeding challenges could not have prepared me for two words..infant
botulism.

After two girls, I became giddy with excitement as our third child’s birth revealed
that indeed our last child would be a boy. A boy spun from pure sugar, and chubby as
chubby could be. My third nursling and fastest grower was known for his robust rolls
and “healthy” appearance.

At 7 months on a holiday where the girls were sick with colds, I didn’t think
anything of my son’s lack of energy assuming the virus had nabbed him too. As the
day wore on though, his cry became a sad moan, and when placed on his tummy his head
seemed too heavy to lift. I scooped him up, tried to nurse him and quickly grew
frustrated with his continuous biting. After a long night of failed nursing,
desperate pleas to my nursing village for help and very little sleep; my mommy
senses tugged, something was not right.

I remember driving to the emergency room while reaching back to hold his head in the
car seat so it wouldn’t flop forward, all while his cries had turned to wispy
whimpers. I cried too, what was happening to our son.

Infant Botulism effects approximately 80-120 infants in the US every year. Many
think instantly of honey and while yes, honey can contain the botulinum spores, so
can the soil in certain communities. Ingested botulinum spores does not in itself
guarantee that a baby will get botulism. A gut which allows the botulinum spores to
thrive is one key element in this disease and part of what makes it so rare.
Symptoms include constipation, weakness, lethargy, poor feeding, and difficulty
breathing. Spores are ingested, multiply, and result in paralysis beginning from the
head, down to the toes. Paralysis is temporary/reversible but botulism babies
often need breathing and feeding support until their bodies regain full fuction,
something that may take weeks to months to occur. It is rare..so rare that some care
providers never see a case in their entire careers.

Well, our local ER was a bit stumped initially, which made my mommy senses scream
just a bit more. A call to a local PICU changed all of that and soon we were being
transferred and Infant Botulism was suspected.

For once he looked so small. My robust, stocky fellow so helpless as they tried to
find a line through the rolls in his arms. Paralysis causing him to wince but be
unable to cry or open his eyes at this point as he endured multiple pokes. I spoke
to him, comforted him as best I could but was told I could no longer nurse him. He
needed a PICU, so by ambulance we went.

Foggy and grim were our first few days in the PICU. From the institutionalized look
of a crib (especially cruel considering he’d only ever slept next to me) to the
uncertainties of what to expect.
I knew enough to request a pump but the horror of seeing my son intubated and
lifeless had robbed me of the milk that he had previously thrived on. Our family and
friends had questions, but we had no answers, and no timeline.

Medical staff clamored to get a look at our son, his pathology may have drawn them
over but the irony of his “vibrant” body made them a bit puzzled. Even a few nurses
admitted that they had come over to see his nearly edible thigh rolls.

An antitoxin was administered within 48 hours and our plan of action was to remain
in the PICU to maintain supportive care and wait.

With a pump and sheer determination (as well as a nursing village cheering me on) I
boosted my supply and proceeded to fill the PICU freezer with milk. I had never been
fond of pumping, but my stubborn streak took over and soon that pump became a
constant witness to the ups and downs of botulism recovery. It whooshed as I
celebrated my son opening his eyes, it whooshed as I cried tears of devastation, it
whooshed as I fell asleep when pumping at 3am (which resulted in many tears over my
precious spilled milk).

I stayed in the hospital alongside our son as he recovered. I read to him, spoke to
him, and sang to him. “You’ll soon be waking” from Baby Beluga (a lyric I later had
tattoed on my arm) became his theme song.

In all he spent 17 days in the hospital. He spent two weeks of that time in the
PICU . He contracted pneumonia, and after being extubated for 48 hours suffered a
lung collapse and was re-intubated. When he lost his IVs and needed dozens of pokes
I could not scoop him up to comfort him, but instead stroked his skin, nestled my
head next to his and shushed as his tears to fell upon my face.

When I was allowed to nurse him again it was like nursing a 25 lb
newborn. Our nursing reunion was not the glowing Madonna rendition that I had
envisioned, but instead a haphazard edition involving lines, machines screaming at
me and many witnesses. He bit me (as he had previously done to protect his airway)
and needed constant support due to low muscle tone.

His recovery was rapid considering a hospital stay of 6-8 weeks was the average that
research had revealed to our care providers.

Recovery continued as we were discharged with an NG tube and an assortment of
appointments for occupational & physical therapy as well as weekly weight checks. A
pump supplemented his nursing until he regained the strength to feed adequately and
on the 9th day post discharge he pulled his own NG tube out in gagging/sputtering
victory.

Now he is a vivacious 2.5 year old. You would never guess that he had ever been
sick. He never had a drop of formula or donor milk and I had in fact pumped so much
while he was in the PICU that I donated the excess to a mom whose baby needed it.
He nurses still, and finds great comfort in his “boombies”.

I now support moms as a LLL leader and have had the special joy of counseling moms
who have babies recently diagnosed with infant botulism. For more information
regarding infant botulism please visit infantbotulism.org.