(Continued from Why I’m Such a Lousy Patient)
It started with difficulty breastfeeding. My four-month-old baby didn’t seem to want to eat. What I did not know then was that it had nothing to do with wanting.
I knew from my reading that if a baby stopped feeding, it was time to go to the doctor. The emergency department physician diagnosed him with strep throat and prescribed amoxicillin. Although it didn’t altogether make sense to me that a baby would suddenly stop feeding due to strep throat, I squirted the pink goo into him and hoped for the best. But the best was not to be. He continued to worsen. His muscles became weak. He was losing his ability to hold up his head. Even the easier bottle nipple was too difficult for him.
We went to baby’s doctor who thought the strep diagnosis must be correct. The culture had come up positive. He must be refusing to nurse because of pain. Give him some Pedialyte and wait for the pink goo to work.
Home again. Quickly, baby’s condition became not worrisome, not scary, but terrifying. He was losing muscle tone. He cried non-stop, a weak, high-pitched mew. Frantic, I began to rock him, and then to whip about in a desperate frenzy, holding tight his head which had become like a bowling ball on a rubber band. In my panic, I thought I could rouse him with vigorous motion. Maybe I thought that. I don’t know what I thought.
Soon, I was spoon-feeding milk and Pedialyte into my son. But he seemed to choke on everything that went into his mouth. On our next visit to the doctor, we demanded that our son be admitted to the hospital, and that is finally what happened.
After a couple of bags of IV re-hydration fluid, baby perked up a bit. His color came back and he stopped crying so much. I was optimistic. It was almost over, I thought. But his muscle tone was not returning. Baby still could not eat. He still could not hold up his head. Something was still not right.
The pediatrician took my son away to do a spinal tap. Meningitis maybe? He soon returned to tell me that my son had stopped breathing during the spinal tap and that he had done CPR to restart him. A primal groan issued forth from so deep within me that it seemed to come up from the bowels of the earth, through my feet, and out through my mouth. As I sank into my mothers arms in the deepest grief I had ever experienced, I knew that my son was dying and that nobody knew how to save him.
The pediatrician performed test after grueling test in the ICU as nurses periodically suctioned baby’s airways to keep him from drowning in his own secretions. I was so overwhelmed with grief, shock, and fear that my body began to shut down. The nurses put me to bed with oven-warmed blankets until I felt strong enough to go back to my dying boy.
As I held and rocked my son in my arms once more, he began to choke. He was suffocating! I shouted in a panic at the nurse: “He can’t breath! He can’t breath!”. Several nurses came then, quickly took him from me and began suctioning. Shortly afterwards a life flight from Portland’s Legacy Emmanuel Children’s Hospital arrived with equipment to finally intubate my son so that a respirator could do his breathing for him.
Earlier, our son’s doctor had been in contact with a pediatrician from Legacy. I had spoken to the pediatrician myself and been assured that he was almost certain that he knew what my son had: infant botulism. “But how?” I asked, “He’s never eaten anything but breast milk and a spoonful of baby pears!” The pediatrician explained that infant botulism is not food poisoning. Some babies seem able to grow the botulism spores in their gut as if it were an airless food container. The good news was that baby would most likely get better. But he would be on life support until the toxin worked it’s way out of his system.
My mother accompanied our sick boy and the team of EMTs on the Life Flight to Portland. I had not slept in 5 days and was completely overwhelmed by emotion and exhaustion, so I rode down in the car with my husband. What went through my mind during those three hours on the road? My first thought was this: my son’s life is permanent. Were he to die, he would live again. Second: if he were to die, I would not go home until someone had removed all of his things. Then I fell to beseeching God for guidance and wisdom. In all other ways I was powerless.
When we finally arrived at the hospital in Portland it was midnight, and although I was desperately sleep deprived, we still had to meet with the our son’s new pediatrician. His news was comforting: although test results take weeks to come back, he was sure that our son had botulism and that we had caught it (barely) in time. He would make a full recovery. I was overwhelmed with relief!
All I could think of after that was getting to a place where I could lie down. The hospital provided us with temporary cots in a special “quiet room” reserved for situations such as this. After I found my bed, I lay myself down without my baby next to me for the first time since his birth, closed my eyes, head swimming, and fell into a deep black hole of unconsciousness. When I opened my eyes again, it was time to find my son.
Walking into the glaringly bright ICU for the first time, my eyes were met with the most heartrending scene I had ever seen. My four-month-old mite of a baby was lying on his back covered in wires and tubes. Tears were streaming from the corners of his eyes and his little chest was heaving sobs, but the tube down his throat made sound impossible. I tried very hard to comfort him, but to no avail. He was inaccessible now, tethered to so much equipment that he seemed part machine. A nurse had tied his arms to the sides of his crib so that he couldn’t pull out his tubes. This felt so wrong, so strange after months of constant contact. I stroked his arms and legs and put my head near him so he could feel my hair. But he was so weak that he could barely lift his arms. In the weeks following, a little stuffed lion with long hair named by grandma, originally, Mr. Lion, would often substitute for my hair, which baby had always loved to feel.
We decided early on that baby would never be left without a family member right next to him except during the twice daily shift changes when the nurses forced us to leave for an hour. Dad and grandma took turns pulling the night shift and I stayed with him all day. This was to protect my health so that I could keep providing the breast milk that would be given baby through his feeding tube.
At that time, in 1998, the botulinum antitoxin, a medication that can cut recovery time by neutralizing the botulinum toxin, was still in the experimental stages. If we had decided that we wanted to have access to it, we would have had to transfer to San Francisco, which didn’t seem like a very good option given that the medication would only have shaved maybe a week or two off of recovery time. We were 3 hours from our home, which allowed for friends and relatives to visit often. The move would have isolated us. We made the decision to stay.
My days were completely consumed with caring for baby and alternately finding private places to pump my breast milk every two hours. I spent hours and hours holding my baby in the blue reclining rocker next to his ICU crib, he and his tubes and wires propped up with pillows. The stress of watching my baby suffer through daily blood draws, respiratory therapy, and IV placements was sometimes so overwhelming that I had to leave him with daddy or grandma in the ICU. What helped was to look at the photo of baby which we had taped to the end of his crib, eyes curious and wide open. We knew that he would be that sweet silly boy again. It was just a matter of time.
One day, tests revealed that a potentially dangerous bacteria had taken up residence in baby’s breathing tube, so antibiotics were prescribed. Unfortunately, the antibiotic chosen was a sulfa drug which baby turned out to be exceedingly allergic to. He went into anaphylaxis and had to receive breathing treatments. I don’t think the doctor or nurses ever admitted just how scared they had been that day.
Since infant botulism is exceedingly rare, our pediatrician informed me that he had only a basic understanding of how to bring a baby through it safely. If I wanted to know more, I would need to do some research. Doctor handed me a thick, black binder full of articles on botulism which seemed rather unprecedented to me after so many negative experiences with doctors. Here was a doctor who was more interested in the welfare of his little patient than he was about his ability to appear infallible. I took him at his word and devoured everything in the binder.
Clostridium Botulinum bacteria produce the most toxic substance known to man. Botulinum toxin causes progressive paralysis, beginning with tiredness and muscle weakness, and often progressing to the point where the muscles used to swallow and breath are so weak that the patient dies. The symptoms of infant botulism include constipation, lethargy, weakness, difficulty feeding, and an altered cry, often progressing to the point of respiratory failure and death if prompt medical care is not sought. Because supportive medical care is now available, the case fatality rate for infant botulism has dropped from 50% down to 7% in the past 50 years.
Botulism spores are found in soil and tends to be present in the air in places where the soil has been disturbed such as agricultural regions and constructions zones. It also tends to be present in honey, which is why doctors counsel new parents not to give honey to their infants. In spite of that, however, most infants who contract botulism had never been given any honey. The reason some babies develop botulism while others exposed to the same environmental conditions do not is unknown. My hypothesis at the time was that since my son had had very infrequent bowel movements since shortly after birth, that his septic, stagnant tummy had acted as a perfect breeding ground for the deadly spores.
Botulism tends to cause anemia. Because of that and because we are Jehovah’s Witnesses and do not accept blood transfusions, baby was being given things to build his blood count. One of the blood building medications he was given was erythropoietin. He was also given iron. Because of the reading I had done, I knew that botulism feeds on iron in the gut. I wondered if stopping the iron supplementation might speed his recovery. The doctor had not considered that and immediately ordered that the iron be stopped. It did seem that baby’s recovery progressed more quickly after that.
Some of our nurses thought they were being reassuring by informing me that I needn’t worry too much about my milk supply since they could always mix my milk with formula. Well, I very well would be concerned about my milk supply. I was well aware that baby’s immune system was under a terrible assault and that the last thing he needed was less breast milk. One nurse took my convictions personally and proceeded to angrily defend her use of formula with her own children, trying to convince me that formula would do no harm. That was one of the days that I walked across the street to the Ronald McDonald House where we were staying, completely overwhelmed and in tears. At least the doctor was on my side if the nurse wasn’t.
There was one nurse in particular who was special. I did not like her at first. She wasn’t very friendly and she was very strict about kicking us out during shift changes. But she was good. She knew her business and she was very particular about how it she went about it. She understood that the job of a pediatric ICU nurse is keeping children alive, and she took this very seriously. She did not tolerate mistakes. I think she would have taken all the shifts if it had meant that her charges would be kept safe. And what meant most of all is that she learned to care about our little boy.
My family and I did not come through this ordeal by ourselves. God answered our prayers by giving us “strength beyond what is normal” and by sending us the loving support of our friends. Many made the long trip from home to see us. We also met many friends from the local congregation in Portland who truly proved to be “a strengthening aid”. One family in particular went above and beyond by bringing dinner to share with us in the hospital on several occasions and were very often with us during those difficult days.
Baby gradually began to regain the use of his muscles. After about 3 weeks, he was successfully taken off the respirator. Soon after, he was able to move to the pediatric floor where he had much more freedom. He received physical and occupational therapies to help re-teach him to use his muscles. And here’s the best part: he began to smile again. True, it was a pale, eyes half mast imitation of his former bright smile, but it was beautiful to see. We used to strap him into his little red therapy chair and put him in a wagon. He loved that, and was often seen being wheeled about with what looked like a sucker hanging out of him mouth (actually a moistening sponge), kicking his little legs in glee at his newfound freedom.
The time was approaching when we would finally be able to go home. Nurses were teaching me how to tube-feed baby, to administer his medications, and to generally be the nurse to a child recovering from a deadly infection. I was overwhelmed and apprehensive. I had so many questions: How long would he have to take the laxative medications? What if he was never able to come off them? Were they doing any harm? Wouldn’t vaccines overstress his system now? Would there be any long-term consequences from all the medications and interventions baby had received? I didn’t get many answers. In fact, I met with anger when I asked them. I found that long-term wellness is not the province of hospitals, and again, I would have to become the expert.
Botulism taught me right at the beginning of my mothering journey not to ever, ever take life for granted; to cherish every moment. You never know which one might be the last. It also taught me deep gratitude for the technology that saved my son’s life, but at the same time, that taking personal responsibility for our health and the health of our children is not only responsible, it is necessary and life-saving.