Vita and Anabelle: Infant Botulism

It all began on Saturday evening, when Vita abruptly stopped nursing. She simply wouldn't eat, which was quite strange because she's always been a good eater. She was also crying a lot, and just wasn't acting like herself. I assumed that it was a teething related "nursing strike". I eventually got her to drink a little bit from a bottle. When she went to bed that night, I assumed she'd wake up very early and that she would be quite hungry. Instead, Vita slept 11 solid hours (when she usually only sleeps 8). I became very concerned when she STILL wouldn't nurse, and continued to cry. I spent all morning trying to feed her breastmilk from a bottle, from a sippy cup, from a spoon, and finally from a medicine dropper and I had very little success. We took her to the emergency room that afternoon (Sunday afternoon). I assumed that I was being overly cautious and that the ER staff would tell me that she's teething and send us home. Vita's crying and lack of interest in food continued while we waited in the ER. Her crying was nearly constant and got increasingly weaker and more course. When we held Vita, she would occasionally drop her head into our shoulders. Finally, we were seen at Dominican ER. The doctors drew blood and took x-rays of her stomach and chest. As time went on, Vita continued to deteriorate before our eyes. The pictures below show a bit of her deterioration... as she became increasing limp and lifeless. The first photo was taken at around 8pm, and the second at around 1030pm. (PS - I know this is hard to see, but we feel that it is important to document the ups and the downs.) Staff at the Dominican ER determined that her stomach x-rays were very abnormal and they suspected a bowel obstruction such as intesesuption. They arranged for a medical helicopter to fly us to Stanford's Childrens Hospital. (That's when we REALLY REALLY got scared.) They don't usually let a parent fly in the helicopter with the patient, but they made an exception for me... so Vita and I flew to Palo Alto and Ernie went home to collect a change of clothes and headed out to meet us there. We were admitted to the Pediatric Intensive Care Unit (PICU) at around 2am on Sunday night (well, really Monday morning). A cluster of doctors and nurses immediately began a series of testing to try to figure out what was wrong. Within 15 minutes of arrival, staff became convinced that bowel obstruction was not the problem and someone uttered the words "infant botulism" among other potential theories such as various types of meningitis. From the beginning it seemed like a long shot, since infant botulism is so rare... but the symptoms really seemed to fit. The staff at the PICU have done their best to keep Vita comfortable, but she really has been subjected to a lot of testing. The list below is just what I can remember off the top of my head: blood draws (I lost count... maybe 10 or so), stomach x-rays, chest x-rays (daily), tube in nose to empty contents of stomach, IV in hand, new IV in hand, another IV in foot, urinary catheter, nose goop swab, electrocardiogram, poop sample, spinal tap, CT scan (pictured below), ART line, PICC line, assisted breathing tube, and probably more things I forgot. Ultimately, everything other than botulism was ruled out, and IB (infant botulism) seemed more likely to be the case with every "normal" result from every other test. However, infant botulism is diagnosed with a stool sample, and the test can only be done at just a few labs across the country, and it takes a few days. Staff decided that the risk of waiting three days to treat it was greater than the risk of treating it before the diagnosis was confirmed. Here's Vita waiting for the antitoxin... very sick but in really good hands. The treatment for IB is an antitoxin known as Baby BIG. It is extremely scarce, extremely expensive, and quite a big deal. Vita's meds were flown into Stanford and arrived at about midnight Sunday. When the pharmacist walked the medicine to the room, you would have thought she was delivering the Holy Grail. The medicine was administered at about 1:15 am (early Monday morning) and Vita did not have any sort of bad reaction to it (which is really good). The antitoxin attacks the neurotoxins that have not yet bound to the nerve endings... so the toxins that have already been bound will have to just take their course but any other toxins will be stopped short. So, generally, the antitoxin shortens the course of the illness dramatically. IB babies who get Baby BIG spend an average of 2 weeks in the hospital, as opposed to nearly 6 weeks for babies who don't get it. So, Vita is REALLY fortunate to have received the antitoxin so early. Then came the waiting... The progress of someone recovering from IB is slow and can be virtually undetectable on a day to day basis. So we waited for the test results, and we waited for any progress in Vita's gag reflex and movement of her limbs and other indicators. Meanwhile, Vita's poop was travelling to Virginia, and was injected into a bunch of very unfortunate mice. The test finally concluded that YES... VITA HAS INFANT BOTULISM. I never imagined I would be so happy to hear those words! So, it's a huge relief to finally have a diagnosis, to have received the super fancy medicine, and to see Vita making tiny improvements. She's on the rebound and is expected to COMPLETELY recover, although the recovery may be quite slow. Already, her gag reflex is starting to come back, she opens her eyes a tiny bit, and she moves her arms and legs more than yesterday. YAY! Vita has become a bit of a rock star here at the hospital. Infant botulism is extremely rare (about 100 cases per year nationally) so many of the doctors and med students find Vita "interesting". So Vita gets a lot of attention, and many visitors. In fact, the Sr. Associate Dean of the Medical School brought students up to have a look at Vita so they see a demonstration of what infant botulism looks like. Then, they gave Vita this "certificate of appreciation". Not every baby has one of these for the baby book... I know you must be wondering... how on earth did Vita get infant botulism?!? Well, we'll never know with any certainty exactly where it came from, but here's what we know: Vita's botulism did not come from food . We know that for sure. Most cases of infant botulism are believed to come from spores in soil or dust that a baby inhales, and we believe this is how Vita got it.