Infant Botulism Part II: The hospital and the help we needed

It was the middle of the night as the ambulance drove us down Highway 101 to Kaiser Santa Clara Hospital, my husband’s car following closely behind. The reality at that moment was more than I could grasp. I was exhausted, terrified, and completely disoriented. I went into that hospital through the emergency room, chasing a bed that was wheeling my baby girl to the Pediatric Intensive Care Unit. I didn’t leave the hospital again until she was discharged.

Settled in our room, the doctor came in. I’m sure there had been some examination and information exchanged at that point but I didn’t register much of anything until that doctor walked in. He slid the door shut and pulled the curtain over the windows. In a calm and comforting tone, he asked us to sit as he talked through her diagnosis.

I recall asking how worried we should be to which he replied, again, in a tone akin to Mr. Rogers, that we needed to be very worried. My husband recalls him saying that our baby girl had a 50/50 chance of survival. He walked out and I collapsed in tears.

He was 98% certain that we were dealing with infant botulism. He was unsure what type (4 types are found in humans) but that was really a minor detail at that point. The only way to confirm the diagnosis was through a stool sample. I’ll remind you that baby girl had not pooped in nearly two weeks. One of the few truly entertaining moments of her hospitalization was the administration of an enema. I’m sure it was unpleasant for her but, in all her overachieving glory, that sick little girl sprayed the nurse with her feces and the sample was acquired and sent to the lab. She was confirmed to have C. Botulinum Type B.

Before a definitive diagnosis even came in, the doctor was on the phone with the U.S. government. The treatment for infant botulism is called BabyBIG®, Botulism Immune Globulin Intravenous (Human) (BIG-IV). It is an orphan drug (owned by the government and not a pharmaceutical company) made of human-derived anti-botulism toxin antibodies that is approved for the treatment of infant botulism types A and B.

Medical dramas like to throw in the occasional botulism episode (New Amsterdam, Bones, Criminal Minds), and for good reason. These shows all depict botulism being used in chemical warfare. It is for this exact reason that the treatment is held under lock and key by the U.S. military. Our entire first day in the hospital was spent waiting for a uniformed officer to deliver her dose of BabyBIG from an army base outside of Los Angeles to our hospital in Northern California.

The process was slow but our baby girl made a full recovery. The hospital stay was a blur of medical professionals (nurses, pediatricians, a pediatric neurologist, occupational and speech therapists, social workers). My mom and husband were on a daily rotation in order to give me a break. Mom would come in the morning with breakfast toast and fresh coffee. She’d head to work around noon and my husband would roll in around 3 p.m. and stay until bedtime. Friends and cousins visited bringing toys and books for the baby and a fresh coffee for me. We would put baby girl into a little red wagon that the department had, prop her up with a stuffed moose from my husband’s recent work trip to Utah, and take her for walks around the floor.

There were more ups and downs than I can count. The day they finally took out her NG tube (day 12 I think), the little orange tube that had provided all her nutrition since we had arrived at the hospital, was a hard day. It was an experiment to see how well she could eat on her own. I couldn’t get her to eat the entire day and come the evening I was nearly in tears. My husband brought me tacos for dinner and I can’t describe how therapeutic they were. By day 14, she had figured it out and we were finally allowed to go home.

I danced out of that hospital. Our little girl survived. I came home after two very long weeks, finally able to cuddle my kitten, sleep in my own bed, and watch our little one return to her previous track record of growing baby.

As a parent, there are few things worse than watching your baby (or child) laying in the PICU, hooked up to wires, and being fed through a tube in her nose. We were lucky to have a village supporting us. I knew that my baby girl was in the best hands possible but all the people and organizations that rallied for me, to allow me moments to take care of myself, made all the difference. In no particular order:

My mom showing up with a healthy breakfast and a fresh cup of coffee every morning

My husband supplying a fresh rotation of clothes and making sure I had a proper dinner every night. As a nursing mom I was entitled to hospital food but have you ever lived on hospital food for an extended period of time?

The friends and family that visited or called and offered a few blessed moments of distraction.

If your little one is hospitalized, the most important thing you can do is take care of yourself. Your baby has an entire medical team making sure he/she is ok. Don’t be afraid to ask for your own army in return. What is self-care for you? For me, it was fresh coffee and time with friends and loved ones. Ask for help. It’s out there.

Infant Botulism: The day I learned to trust my mom gut