Janie Wakefield vs. Infant Botulism

This gets long, but in short, our baby girl beat infant botulism in January, 1-0, and now we face the medical bills. The full story: 

In January 2020, the month from hell, Abbey was having some mild concern about Janie (our 2 month old baby girl) as she seemed weaker than normal. Her cry seemed muffled and she was having problems breastfeeding, so we went in for a pediatric checkup on the morning of January 14.

At the checkup, our pediatrician had some concern about her reaction times and constipation, so he said he was 50/50 on taking her in to the hospital for monitoring or just going home and seeing how things progressed, but he eventually decided that he would probably go in if it were his kid. Abbey chose option 1 out of an abundance of caution. We went to the ER around noon that day, and by 3 p.m., her condition had rapidly worsened: pale yellow, zero reaction to reflex testing, extremely weak, and at times, completely non-responsive.

I held her at one point that afternoon and she appeared completely lifeless.

The staff in the Pediatric ER gathered around and brought her back a bit, got her on an IV, and then we went in for an MRI (Abbey had to go with her to keep her head completely stable… traumatizing for mom too). They then sent us to the Pediatric ICU (PICU) for monitoring and got her on a feeding tube.

When the MRI came back clear, the neurologists decided she was most likely sick with “infant botulism,” a rare bacterial infection that  develops when a baby ingests spores present in honey and soil. (No honey in our house, so she’s probably eating dirt behind our backs.) There are fewer than 100 cases per year in the U.S., and our doctors at that point had never personally seen it before, but it’s apparently the answer to a common med school test question. Hallelujah. (Tests later came back to confirm that diagnosis.)

They immediately ordered very expensive overnight meds from L.A., the doctor joked that they were escorted in on a red carpet, and Wednesday afternoon, she was treated. They told us to expect the same extremely weak condition for 48 hours or so and then hope for the best with a 3-4 week recovery expected if all went well.


We started to see some signs of improvement after about 36 hours, and by Saturday the 18th, a lot of improvement. They moved us out of the PICU and onto the general pediatric floor that day. We spent a full week there under monitoring as Janie gradually built up the muscle strength to feed on her own again, and then we went home on Saturday, January 25. Sisters Lily (6) and Nora (1) were happy to have both of their parents and their baby sister back under the same roof for the first time since the 13th.

The traumatizing 12 days in the hospital were also an expensive 12 days, but we clearly had no choice but to endure them. The small vial of botulism medicine itself cost over $67,000, so thank goodness for the CMS-provided health insurance that we're still paying for out of pocket through Abbey's maternity leave.

That said, our hospital costs are still much more than we can afford, currently estimated near $10,000 after insurance, and so, we come to the classic, traditional American institution of internet crowdfunding for necessary medical care.  Abbey will also need to continue her unpaid maternity leave: She planned on returning to her job (as a first grade teacher at a Title 1 school) on February 3, but now she won't be able to return to work until Janie is back to full strength.

Between the loss of income, hefty insurance premiums, and now massive, unexpected medical bills, 2020 is off to a fantastic start.

We're still extremely thankful that Janie is on the road to recovery.

And we appreciate any help you decide to give.

Cringing to ask for it, 
Johnny and Abbey