Meningococcal Meningitis: A Mother's Memoir
by Raul Moreno

Sick. For a homeschool kid, this means a vacation with no homework and a sense of dismal excitement. I ask for ginger ale but fade into a nap on the sofa with my polar bear, Griz, before Pop arrives home from the grocery store. Everything feels hot and feverish. A sheet covers the sofa and the room looks fuzzy. Now I'm taking a bath. Why won't they let me sleep? My neck feels so sore, like I've awoken from a nap curled up against the backseat window in our minivan.

I do wake up, but now I'm in the hospital. People wrapped in aprons keep coming and going. Pop later said my neck was stiff as a board against his arm when he carried me into the emergency room. I'm allowed to watch more TV than usual. Here comes the awful nurse with the tube to stick in my arm. Can't look. Crying. Mom and Pop offer hugs. Then there are ice cubes, Popsicles, or M&M's as a reward. I'm so thirsty. Pineapple juice tastes wonderful, but they won't give me enough, just spoonfuls. Can I watch more TV, Mom? There's a remote control, something we don't have at home. Sesame Street is so much more interesting in a hospital. Get-well cards migrate to the plastic shield above my bed, forming a canopy. Someone brings a gift, and I unwrap it to discover a shiny toy fire truck made of thin red plastic. I feel like the sick boy in The Velveteen RabbitÑout with the old toys and in with the new. Thankfully Griz is here, safe and sound. Cars drive through the rain outside my window.

Dr. Charles Fuchs comes in with a white coat, stethoscope, and Sesame Street instruments. Big Bird goes in my ear, Oscar peers up my nose, and Elmo shines a bright light at my eyes. Dr. Charles Fuchs has a familiar, nodding face, a bushy moustache, and Birkenstocks. Now I'm strong enough to move around. I wind the handle on the end of my bed, making the mattress rise and fall while Dr. Charles Fuchs talks to Mom and Pop. We take walks around the hospital, and once we visit the kitchen. Meals are delivered on lots of trays. Mom reads another chapter aloud from the red book while I eat. Applesauce comes in plastic cups with tin foil covers. I'm getting tired of macaroni and mashed potatoes. Pop arrives to spend the night on the cot. He looks tired and his hands are cold. Grandpa and Grandma visit on the weekend. I say hello and fall back asleep.

They say I can finally go home now. A wheelchair! How embarrassing. I get a purple metallic heart with a diaper pin: "For Bravery." On the day we leave I'm standing on the steps leading to the emergency room holding my suitcase and smiling. Mom snaps a photo, and now I'm unsure whether I remember that moment or the picture that captured it.

These are the fragmented and limited memories I retain of ten 1985 winter days spent at Saint Joseph's Hospital (now fashionably remodeled as Southwest Washington Medical Center) recuperating from meningococcal or "bacterial" meningitis. Although the disease has largely been eradicated in the United States, parts of Africa still suffer severely. In 1996, the biggest wave of bacterial meningitis outbreaks ever recorded hit West Africa. An estimated 250,000 people contracted the disease, and 25,000 deaths were reported in Niger, Nigeria, Burkina Faso, Chad, Mali, and other countries.

Also known as spinal meningitis, the disease attacks the cerebrospinal fluid that protects the human body's brain and spinal cord. According to the Centers for Disease Control and Prevention (CDC), severe infection may result in brain damage, hearing loss, or learning disability. High fever, headache, and a stiff neck are the most telling symptoms of victims over two year of age. Other warning signs may include nausea, vomiting, discomfort looking into bright lights, confusion, and sleepiness. As the disease progresses, patients of any age may have seizures. The CDC recommends diagnosis be achieved via bacteria growth from a sample "obtained by performing a spinal tap, in which a needle is inserted into an area in the lower back where fluid in the spinal canal is readily accessible."

On October 15th of this year I interviewed my mother, Claudia Moreno, over the Internet regarding her memories of my encounter with meningococcal meningitis. This is what she had to say.

"You were 4 years old. We took you to the hospital at midnight and then you stayed there for ten days. After you returned home you took extra naps, but you were able to play as normal. "You had had a cold for a few days. I remember it was cold weather outside. One afternoon you developed a high fever. You slept for a long time on the sofa. I woke you up to take your temperature. It was about 104. I called the doctor and he explained that young children get high fevers. I should give you Tylenol and bring down your temp with a lukewarm bath. You were very groggy. Pop and I bathed you and you were not playful at all. After your bath you fell back to sleep. I woke you later to take your temp. It was now 105. I called the doctor again, but he told me that children get high fevers. I was getting worried. I gave you another bath and more Tylenol, but you fell right back to sleep after the bath. I kept checking you and at about midnight when I checked your temp again, your eyes went different directions and I knew something was very wrong. I called the doctor again and he said he would meet us at the emergency room.

"I was worried and felt sick to my stomach. It was difficult to drive a half-hour to the hospital wondering what could be wrong, but it felt good to be doing something. Pop drove. We also bundled up two-year-old Ana [my sister] and brought her along. We got there and they rushed us into an examination room. In just a few minutes Dr. Fuchs told us he thought he knew you had meningitis but needed to confirm it. Your stiff neck was a symptom that I didn't know to look for because you were so sleepy. Dr. Fuchs used a needle to extract spinal fluid. You hardly responded. Parts of that evening are a blur. I remember they brought you to a special glassed-in room right across from the nurse's station. The nurses could watch you from there. They started intravenous medication and you were totally out.

"At some point, Dr. Fuchs counseled us and told us what it meant to have h-influenza meningitis. You had a fifty-fifty chance to survive, and if you survived you could possibly have hearing loss or some kind of brain damage. At that time I was just going through the motions with little reactionÑI was numb. Later I learned that is a form of shockÑa response to a traumatic episode.

"I stayed in the room with you and rested in a reclining chair. Pop eventually left to take Ana home. I'm sure that was very hard for him. He went home and called the family Grandma and Grandpa and Tia Kika [my aunt in Guatemala]. Everyone sent letters and gifts. I remember Uncle Dan and Aunt Deb sent you a tape recorder and tapes. It was a great gift for the hospital. You also wanted a fire engine and Grandma and Grandpa got you that.

"The next morning just before Pop arrived with Ana, you went into convulsions. That was the scariest part. I remember I saw you starting to shake. I called the nurse. Soon there were about four nurses in there. They had called Dr. Fuchs. They said I could leave but I chose to stay. I stood in the corner and watched feeling totally helpless. You were shaking all over. The nurses were stressing out. One kept saying we should give him some kind of medication but the nurse in charge said, 'No, we have to wait for the Doctor.' They were all very worried and tense and talking and getting the I.V. ready with medicine. Finally Dr. Fuchs arrived and started giving orders. Just then Pop also arrived to that scene. He was, of course, shocked and very worried. I stepped out to tell him what was going on. Within a half an hourÑperhaps shorter, it is a blur in my memoryÑyou were over with the convulsion and resting again.

"After a while I left to take Ana home and Pop stayed with you. I remember when I walked in your empty room and saw one of your drawings on the wall. I began to cry. I had been numb up until then. I cried and cried and began to pray. It was hard to sleep. It was hard to pay attention to Ana. Sometime later in the week I got hives. It was probably a reaction to the stress.

"After the convulsion, you slept a lot. The next day your condition slowly started to stabilize and improve. I remember when you woke up you were very thirsty but they limited your liquids. We could give you tiny spoonfuls of shaved ice.

"Grandma came down and stayed with Ana. Pop and I took turns sleeping at the hospital. We drove back and forth to be with you and go home to Ana. There was always one of us with you.

"I remember feeling so sad for the children I saw there with no parent around. We realized how important it was to have a family member there. The nurses changed at least three times during the day. Also, you would have a different set of nurses the next day. Sometimes we would have to remind them about some of your medications. One time Pop complained about this to a doctor [Dr. Fuchs was off on this day]. The doctor thought Pop was claiming malpractice and he became quite defensive. We were very protective of you and concerned that you get the best care possible.

"I remember one nurse coming in early in the morning when you were still very sick. She gave you a bath and had me brush your teeth. She said it was important to keep you clean even if you were very sick.

"Ana was very young and unaware of the seriousness of the illness. Because she was at home with Grandma most of the time, she didn't have her life disrupted too much. Grandma even helped her potty-train during that time! I remember Ana, Pop and I also needed to take a special medication. We could be carriers of the meningitis and Ana could possibly get it. I was worried about that. We also had to let the pre-school know of your illness.

"I remember [Pop] was worried and especially sick to arrive in the middle of your convulsion. We were a team in caring for you, always taking turns. He slept with you there many nights.

"The main [medical procedure I had to undergo] was the I.V. You had to be poked a lot and didn't like that. They came with fun bandages and I remember you got to have a Popsicle afterwards. I don't remember any side effects, just that you were in bed for a long time. You had to wear diapers for a while.

"You were very pale at first. You perked up after a few days and enjoyed watching Mr. Rogers in the hospital room. I also read to you. Many people sent cards and we put these all over your bed. It had a glass top. We were concerned that there could be lasting side effects from the illness, but we didn't notice any later.

"A month or so after your recovery, we had to bring you to the hospital for a special brain test. The difficult part of it was that we had to keep you awake all night! That is a challenge for a child of four. We read to you and played games and had to keep taking you outside to keep you awake. Pop and I took turns sleeping. Finally at seven in the morning we drove you to the hospital for your test. They put some kind of sensors all over your head and let you fall asleep. You were tested while you slept. The test showed some irregularity but we never found any lasting problems. We were amazed that you showed no sign of damage.

"Many years later I went for a doctor appointment for my ears. I sat in the lobby and waited for my appointment. While I waited, I heard a disturbance down the hall. A young woman in a wheel chair was making loud, high-pitched noises. A man and wife wheeled her in. I went in for my appointment. The doctor apologized for the noise. He explained that this girl had had meningitis when she was a young child. Now she was blind and partially deaf and had brain damage as well. About that time you were a sophomore in high school, running cross country, a class officer, on the mock trial team, and making a 4.0 grade point. I was speechlessÑseeing what could have happened to you from this illness."

Three ragged pages from an old scrapbook lie here on my desk, like memories torn from experience. Ever the English teacher, Mom encourages me to "write it down before you forget." That's just what she did with my visit to the hospitalÑanother way of responding to what she now calls a "traumatic episode." The interview of October 15th, however, was conducted without the aid of journal notesÑ simply a mother's recollection of her son's illness sixteen years after the fact. Her written record of the incidentÑa few white cardboard sheets covered in loopy ballpoint ink that runs between pasted, fading postcards, a frantically-scrawled note, colorful stickers, a band-aid, and a grimy heart sensor Ñhas lain tucked away in her mammoth, metal-brown kitchen filing cabinet up until now. The scrapbook pages stand as firsthand testimonial to the gritty details of meningococcal meningitis. They tell a different story from the one that emerges from the interview: the story of a young, watchful mother trying to come to grips with a disease that nearly claimed her only son. There are also minor factual discrepancies between the interview and the journaling, namely the number of days I was hospitalized. "BENJAMIN IN 1985," reads the title to the first page, then "February: 12 days spent in the hospital!" She launches into free-flowing narrative as if pouring her heart out on the page:

"February 6 started like most other days. He played happily all morning with blocks and crayons and cars and music tapes. Benjamin had been so full of energy all week especially since he had been through with the cold flu that had him down in the middle of the January. That Wednesday night he was going to go with Mama, Papa, and Ana to buy some new tennis shoes at the mallÑbut at lunchtime that day Benja didn't want to eat then and a little later he told Mama that it hurt to swallow and his head hurt (at the temples). SoÑMama gave him some Tylenol and put him to bed for a nap.

"When he woke up, about four pm he wanted a drink and I (Mama) read books to him for a while. He enjoyed that and told me "Me love you, Mama." Ben felt quite warm so I took his temp. It was close to 103. Then, Ben fell back to sleep on the sofa. I called Papa and the doctor's office thinking we might need to take him in for a throat culture. The nurse suggested the typicalÑfluids, Tylenol, and call back in the morning for an appointment if his throat seems to continue to bother him. Papa came home about 5:30 and then when Ben stirred a short time later we took his temp again and it had gone up to 104.4. We woke him to give him more Tylenol and some [here Mom crosses out "fluids" and specifies] juice and undressed him to cool down and wiped his forehead with wet clothes. A half hour later his temp went down some below 104. Benjamin continued to sleep and every time he stirred we tried to give him more to drink. But, after a while he wouldn't talk to usÑhe just mumbled. We called the doctor right away, as Benjamin had never acted this way before. The doctor explained that many children are delirious with a high fever and suggested we continue with fluids and put him in a bath to cool him down. We did thatÑPop got in a bath with BenÑafter the bath Ben wanted (indicated by pointing) to go sit in the playroom by the heater (his last effort at communication that nightÑother than cries later). We brought him back to the sofa where he continued to sleep and we took his temp every half hour or soÑstill keeping below 105Ñbut had us worried in spite of the doctor's assurance that there was no danger until it stayed above 106. Mama went to the store for more Tylenol and Popsicles.

"When it was time to give Benja more Tylenol we couldn't rouse him and though he would open his eyes he couldn't focus on us. We called the doctor again and he did feel it was time to bring Benjamin to the emergency room for a check-up. The hospital was a 30-minute drive from home. We met the doctor there at about 11:30 pm. Within a few minutes the doctor was quite sure Benjamin had meningitis. The most evident sign was that Ben wouldn't bend his neck forward. He took a sample of Ben's spinal fluid and it was cloudyÑindication of infection. Benjamin was put on an I.V. to monitor his fluid intake as one of the problems with meningitis is that the body retains too much fluid. He also received his Ampicillin intravenously to fight the infection. Benjamin was 'one sick cookie' in the doctor's words. He certainly had Mama and Papa worried! I (Mama) spent the first night with him in his room on a cot. He had a restless nightÑturning and crying off and on. All I could do was say I'm here BenjaminÑand sing songs and hug him and kiss himÑI'm here BenjaminÑI love you Benjamin. Benjamin was also hooked up to a heart and breathing monitor to warn us of any seizure activity.

"The next morning shortly before noon he had a seizureÑseveral nurses and the doctor came to helpÑwith oxygen, a vacuum and medication. Papa and Ana arrived at the hospital just in the middle of it. We stayed right there wondering and praying that all would be all right. After the seizure Ben slept againÑexhausted. Then Papa stayed with Ben and Mama went home with Ana.

"It was so hard to go home without Ben to see all his toys and drawings and not know if he was going to be all right. We cried a lot. I talked to Papa at the hospital often and took a nap with Ana. That evening friends and family were calling every half hour asking about Benjamin. Grandma had called family and friends asking for prayers. Grandpa was in Chicago at a minister's conference and all the people there (750) prayed for Ben when he announced to the group what he had just heard on the phone from Grandma. All this love and concern from so many people helped so muchÑand encouraged us through this very painful time."

Mom included a piece of notebook paper in her memoir with a frantic description of my progressing condition. I imagine she was preparing to talk to the doctor. The note reads, "Feb 6, 1985," then "Happy Normal All Morning" and, "ThenÑDidn't want to eat lunchÑcomplained sore throat and hurt temples [the word headache is scratched out]." Lastly, the phrase "104.4 fever" is etched deeply into the paper as if she retraced those numbers repeatedly. She also included a postcard depicting St. Joseph's hospital. Red flowers bloom in the parking lot and wispy white clouds roll by on an otherwise blue sky. Around the postcard there is more description of my conditionÑperhaps a rough draft to the longer narration. Here she adds, "That night (Feb 7) at about 11 pm Papa says Benjamin started talking. He was so thirsty! He wanted to read Bambi Gets Lost."

On the reverse side of this sheet there is a sticker with a space shuttle lifting off and the words "all systems GO from head to toe," as well as a superman insignia with the title "Super Patient". Another sticker features a smiling bear riding a skateboard and sporting a sweatshirt: "Athletic Supporter". She explains the stickers with a caption: "Switching to different I.V. sites was no fun! Benjamin practiced breathing "psss psss" fast and slow to control his fears and handle the pain [a Lamaze technique Mom learned from birthing class]. He got lots of stickers, Popsicles, and hugs to help him feel better."

Close by, Mom taped a band-aid and heart-sensing electrode to the page, the latter of which protrudes like a dirty steel nipple. Arrows emanate from a nearby sentence: "Blood tests were no fun eitherÑbut, it helped to put a special band-aid on top of the poke." She ends the colorful memoir abruptly, as if tired and ready to save the chronology of my recuperation for another day, another pen:

"Being thirsty and hungry was so hard at the beginning. The second day he was still only allowed a tablespoon of liquid per hour (by mouth) because his body was retaining too much liquid. After that he was gradually allowed more to drinkÑhe took ice chips like an eager little bird. Mama spent the days with him and Papa spent the nights. We massaged him, sang to him, and 'cuddled' with him. Papa gave him his first breakfast on the third day. What a feast."

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Raul Moreno is a junior from Ridgefield, WA majoring in Rhetoric and Media Studies at Willamette University. He plans to attend journalism graduate school and one day join the ranks of foreign correspondents. Raul volunteers on the campus emergency medical team, gives blood on a regular basis, and still enjoys pineapple juice.