Parents PACK Personal Stories – Whooping Cough
In memory of Kaliah
by: Chelsey Charles
When I first held Kaliah my whole entire life changed at that moment. Kaliah was everything I hoped for, and she was even more perfect than I could have imagined. Gazing at me with her big, brown, bright eyes as I touched her thick brown hair, I couldn’t put her down — she was absolutely gorgeous.
Shortly after I delivered Kaliah, the doctor noticed I had a slight cough. She asked me how long I had had it, I responded with “about a week.” That night my cough started to get worse, still nobody seemed too concerned about it. The doctors thought it was probably because I was tired, because I used all my energy in labor. I was asked if I wanted to get vaccinated for whooping cough before I left the hospital and I said yes. Since I hadn’t gotten it in five years, I needed the vaccination for school, but the doctors wanted to wait till after I gave birth. They gave me the shot the next day and sent my perfect little family and me home.
Whooping cough – the symptoms
When Kaliah was about 10 days old, I heard her sneeze; like any new mother, I panicked. I started searching the Internet on symptoms of newborn colds. At first, nothing seemed to catch my eye until I found a site on whooping cough, calling it “extremely dangerous for newborns.” Out of all the symptoms, I had one and Kaliah had one. I had my cough, and Kaliah sneezed. I kind of thought I was just psyching myself out. The next day, I was on the phone with my mom, and she said my cough sounded terrible. I had also heard Kaliah cough a few times that day. So again I started to research whooping cough. I watched a few videos and read more about it. I began to get more panicked; I convinced myself this is what Kaliah and I had contracted somehow.
I decided to go to the doctor. The doctor asked me about our symptoms, and then, he told me we didn’t have the symptoms of whooping cough and that we appeared fine. I explained to him about how I researched pertussis and read that it makes you appear fine until you’re having a coughing spell. I asked him to test me and Kaliah both for it. He finally agreed to test me, but said they had never tested a baby so young before. He didn’t want to because he didn’t think it was necessary, but I kept insisting that he should. I told him I had a really bad feeling that pertussis is what we had. He called in a nurse and told her to go ahead and give us the nose swabs. He then prescribed an antibiotic for both of us.
Whooping cough – the diagnosis
Two days later, I got a phone call from the health department telling me that Kaliah and I were both positive for pertussis. I was in utter shock. How could this happen?
Kaliah was hospitalized two days later. Her mom Chelsey and the rest of Kaliah’s family watched helplessly for the next nine days as she continued to battle the infection raging in her body. Sadly, Kaliah died from pertussis when she was 27 days old.
Continue reading Chelsey’s story about what happened after Kaliah was hospitalized on a vaccination blog started by Chelsey’s aunt.
by: Cheri Rae
Editor's note: The following article tells the story of a child's and an adult's encounter with whooping cough, and is reprinted in 2005 with permission of the Santa Barbara Independent.
The first time we went on a date to a movie, John looked around with alarm when he heard someone coughing nearby. As the coughing continued, he looked more and more uncomfortable until he finally asked me if I minded if we moved down a couple of rows. "What's with this germ-o-phobe?" I scoffed. "What's the worst that can happen if somebody coughs on you?" His more charming traits won me over, however, and I married him despite this quirk. After two decades of putting up with changing seats because someone was coughing, I see now that John's fears were well-founded.
Our son Daniel's recent case of pertussis, also known as whooping cough, has sensitized our entire family to the realities of just how bad a cough can be. The disease is a highly contagious bacterial infection that is quickly spreading in communities across the country, including Boulder, Colorado; Ashland, Oregon; Pocatello, Idaho; Madison, Wisconsin; and right here in Santa Barbara.
It started out innocuously enough; toward the end of winter break, my normally energetic 7-year-old began to tire easily; he developed the sniffles and a dry cough. When increased rest, plenty of fluids, and a couple of batches of homemade soup had seemingly no effect on Daniel, we took him to the pediatrician, who diagnosed a sinus infection and prescribed a course of antibiotics.
After a few days, Daniel showed no improvement; in fact, his cough sounded worse — dry and deep, and it seemed to come in waves. He might hack for a full two or three minutes at a time, and then not cough again for an hour. All the coughing was affecting his ability to get to sleep, so he began each day exhausted from the night before.
Clearly this child had something other than a sinus infection, and I was becoming alarmed. I drove to the pediatrician's office and insisted my son be seen immediately. The doctor and I discussed his condition, went over his recent records, and tried to piece together what might be going on with this miserable-looking little boy, who had been perfectly healthy during his physical that was conducted just a month earlier. He had no fever, no congestion, but was clearly unwell.
She asked me about where we had been, and if we had been around anyone who had been sick. I desperately reviewed our holiday travels and activities: trips to Los Angeles and Orange County, but everyone we had visited had been well. Finally, I remembered our daughter Sophia's friend who had been out of school for quite some time. Sophia had spent a good deal of time with this friend who had a bad cough blamed on bronchitis, but ended up with pneumonia. But Sophia had not gotten sick, and the girl had not been around Daniel, so it seemed unlikely that he had contracted anything from her. Still, the doctor suggested we test him for whooping cough, just in case.
The nasty little procedure involved inserting long cotton swabs deep into Daniel's nostrils. Four hours later, the doctor called confirming the diagnosis. Despite being immunized, Daniel had contracted whooping cough. My first response was relief to finally have a diagnosis. But relief turned to dread as the doctor began to detail the required course of action.
She was required by law to contact the Public Health Department and the entire family had to be treated with a course of antibiotics to prevent the further spread of the disease. A public health nurse would come to the house to discuss Daniel's recent contacts, who would then need to be alerted to his condition; the school would have to be notified. Daniel would have to stay in the house and no one could visit during the five-day course of antibiotics.
My mind began to race. How many people could he have infected? I retraced Daniel's activities for the past couple of weeks and counted up a play date, a sleepover, and a neighborhood birthday party. A sense of responsibility mixed with a feeling of embarrassment washed over me, as I made the initial calls informing friends and neighbors about their exposure to this extremely contagious disease. Each of them expressed concern for Daniel and undertook their own course of action: two immunized neighborhood children and one mother went on antibiotics; two un-immunized boys who had played with Daniel tested negative for exposure.
The Public Health Department advised Daniel's public elementary school; each family received a letter informing them of possible exposure to a probable case of whooping cough. When our pediatrician informed us about the concept of herd immunity — the more children who are not immunized, the higher the risk of disease — we checked in with the school nurse. We were shocked to learn that the rate of un-immunized children in the herd of Daniel's schoolmates was 24 percent, and that another 10 percent were under-immunized — immunization levels comparable to some Third World countries.
The cough thickens
One evening, Daniel's coughing rapidly worsened, his spasms were harder, louder, deeper, and more alarming, with a distinct "whooping" sound as he tried to inhale. There was panic in his big blue eyes, and his face reddened from the exertion as he struggled. "I can't breathe," he managed to croak out between uncontrollable waves of coughs. After several minutes of coughing, he vomited. In desperation, my husband hustled Daniel into the bathroom and turned on the shower, hoping the hot steam would ease his breathing. We contemplated heading straight to the emergency room while I called the pediatrician.
It was the first time in 13 years as a parent I had to place an after-hours call. Daniel was hacking so loud, I couldn't even hear the dispatch nurse when she answered. "I just figured you would eventually hear me," she said. "I heard all the coughing, so I knew why you were calling."
The pediatrician came on the line and listened as I described this whooping cough crisis. "This is why you must immunize your child," she scolded.
"He is immunized, but he got it anyway," I told her.
The doctor then became a model of kindness and calm reassurance. She explained that during this new phase of the disease it was normal for him to lose his breath. "You must relax," she said, "and expect this to happen. You must teach him breathing techniques through his nose; guide and coach him through the hard coughing so he can modulate his breathing. Remember, if you panic, he will panic."
Right. I will not panic when my little boy coughs until he vomits, coughs for 10 minutes straight and struggles to take a breath. While he expects me to help him, and I know I cannot, I will be calm, rub his back, and repeat my new mantra, "Breathe through your nose, honey, and it will get better. Just relax; I'm here and you're going to be fine." For the next couple of weeks, the whole focus of my life was keeping Daniel breathing through one coughing spell after another.
The coughing always worsened at night. Daniel was afraid to sleep by himself, and I couldn't let him be alone anyway. The two of us camped out on the futon in the guest room. With our warm blankets, a pile of books, and the vaporizer going, we managed to get through the long, dark winter nights. Sometimes we stuck our heads out the window, looked at stars, and breathed in the cold night air. Sometimes we reached our hands out to grab at the rain. Daniel discovered the late-night fun of watching Jon Stewart and David Letterman, two silly guys he'd never seen before.
We discovered some ways to cope: lavender oil massages helped him relax and fall asleep. Frozen cubes of Gatorade when thrown in the blender become a wonderful slushy treat — great for a child who needed to stay hydrated, but couldn't tolerate dairy products or fruit because of the side effects of the antibiotics. Popsicles helped hold off bouts of coughing. As we consumed a couple at 1 o'clock in the morning, Daniel actually said, "You are such a great mom, letting me eat popsicles in the middle of the night. This is the best thing I've ever tasted in my young life."
Clearly, this disease had put him in touch with his kinder, gentler nature. It also awakened his sense of vulnerability. I had no idea how much so until the next day, when we were in the yard and a neighbor walked by. When told about Daniel's illness, she gasped, "Whooping cough? Children die from that!" Daniel refused to eat, drink, or speak for the rest of the day.
During the whooping cough siege our hearts were touched by acts of grace: out-of-town grandparents mailed small gifts and added Daniel to their prayer chain; a neighbor stopped over on her way back from Farmers Market and delivered a bag of tangerines and some library books; a friend loaned us a steam vaporizer; Daniel's godmother, who operates a homeopathic institute in faraway Mallorca, Spain, called and suggested some remedies.
On his eighth birthday, Daniel's class sang him "Happy Birthday" over the phone, and a couple of mothers baked cupcakes and cookies and brought their sons over to celebrate. After a half-hour of uninspired play one young guest observed, "Daniel doesn't seem like Daniel."
When they left, I asked Daniel how he was feeling.
"I feel all drummed-out," he replied.
"What does all drummed-out mean?"
"You know how when you play a drum and you use the pom-poms and hit it real hard for a long time until you can't hit it any more, and then you stop? That's all drummed-out. I feel like the drum."
The cough heard 'round the world
A few days after Daniel's diagnosis, I read in the paper about 28 Afghan children who died recently in a whooping cough outbreak, and a massive immunization effort undertaken by the World Health Organization. A week later, I saw another article about the declining effectiveness of pertussis immunizations after about 10 years, and so many concerns about adolescents' and adults' susceptibility to whooping cough that the FDA is considering recommending a booster shot for teens.
I began hearing the whooping cough stories: A 70-something friend told me about the case of whooping cough she had when she was just a girl. The coughing got so bad that she strained the muscles in her eyes, and has required glasses ever since. More than one mother reported that it took their un-immunized children more than a full year to get back to good health following their ordeals with whooping cough. I learned that three babies in California died from whooping cough last year, including an infant from Ventura who died at Cottage Hospital.
Parents who choose not to immunize their children also weighed in and explained their beliefs. A sizable number of parents these days choose not inoculate their children for various reasons that run the spectrum of medical, religious, and political beliefs. Objections include fears about side effects, an overall distrust of Western medicine, and concern about government intrusion in matters of personal health.
As one anti-immunization mother explained, "I just don't follow the herd mentality. I just want my children to get strong and develop their immunities on their own. We don't go to Bangladesh; we don't have much risk."
Another mother, who nursed her un-immunized children through their bouts with whooping cough, noted, "I look at the disease as a gift. It brought us closer, helped us become more aware of our bodies, the people around us, and how we have to protect them. It was a difficult three-month period of time, but I wouldn't have done anything differently."
As an independent spirit, I'm typically inclined to support alternative lifestyles and philosophies. As a responsible parent, I don't ever want anything bad to happen to my children — or any other children. As a neighbor, I'm still unwilling to make a welcome-baby visit to the 2-month-old across the street. As a citizen, I am deeply concerned about the impact of health choices made by individuals on the overall health of other individuals and the public at large. Still, the question continues to haunt me: How do we reconcile the issue of maintaining personal beliefs with the devastating reality of communicable diseases?
Daniel's bout with whooping cough has taught me firsthand the consequences of rejecting immunization as part of a lifestyle choice, and the limitations of believing in immunization as an invincible protective shield. Because Daniel was fully immunized, his was considered a light case of whooping cough. I don't want to imagine a bad case of the disease in a non-immunized child. I still feel like I failed to protect my son by not knowing all the facts about immunizations and herd immunity.
Pertussis among us
After nearly three months of living with whooping cough, life is getting back to a place where disease isn't the first topic of conversation. Now in the convalescent stage of his illness, Daniel's bouts of coughing are confined mostly to mornings and evenings. The strained ligaments in his chest are healing, but his stamina isn't back yet. He recently suffered a two-week setback when he developed a secondary viral infection that attacked his vulnerable bronchial tubes. He's lost five pounds since this all began; we're working to build up his immune system and make sure he gets enough rest. Because he has missed countless days of school, we're doubly focused on helping him grasp essential second-grade concepts.
Our family recently celebrated our return to health, and took in a matinee. Quietly savoring this ordinary pleasure, my ears picked up on a familiar sound in the theater. Daniel heard it too. He looked at me with alarm. It was a cough we heard, and not just any cough. There in the dark, somewhere far behind us, over and over again, a child was coughing loud, hard, and long. Between coughs we heard that familiar struggle to take a breath, and then more coughing. It was the unmistakable sound of an old-fashioned disease taking hold in an unexpected place.
Contrary to what many believe, immunizations are not required for children to attend public schools. According to California state law, parents can exempt their children from public-school immunization requirements because of medical conditions or due to religious or personal belief.
On March 15, an FDA review committee gave a favorable recommendation for two vaccines: Boostrix, which would add a pertussis component to the diphtheria-tetanus booster currently recommended for adolescents; and Adacel for both teens and adults under 65. If approved, the boosters would target the teenage population, which, because of waning immunization, is likely the source of approximately 39 percent of pertussis infections nationwide (according to the Centers for Disease Control). Both vaccines are widely administered throughout Europe and Canada. The FDA is expected to make its final recommendations within three to six months.
What is whooping cough?
- According to the Centers for Disease Control and Prevention (www.cdc.gov), individuals are considered to have pertussis (even if they are immunized) if they have a cough lasting for at least 14 days (with no other confirmed cause) and any one of the following symptoms: coughing spasms, a whooping noise while inhaling, or vomiting caused by the coughing.
- Pertussis is particularly serious for infants and young children. In the U.S. from 1997 to 2000, one out of every five children with pertussis was hospitalized, including 63 percent of all infants under six months. During this time, there were 62 deaths, 90 percent in infants.
- Increasingly, adults and teens are the source of infection of pertussis in children and infants. Because the disease is difficult to recognize in this older population, it is frequently mistaken for other respiratory illnesses including bronchitis, sinus infection, the flu, and a cold.
- Pertussis is spread from person to person through the air by infectious droplets; it is a highly contagious infection caused by the Bordetella pertussis bacterium.
- Whooping cough is known as the 100-day cough in Chinese medicine because of the length of time it takes for the cough to subside.
- Antibiotics do not cure whooping cough; they can help prevent the spread of the disease if administered in time.
- Visit whoopingcough.net to hear the sound of a child with whooping cough.
- Visit vaccineinformation.org and click on "Pertussis" for vaccine information.
- Read the article "Bucking the Herd" in the Atlantic Monthly, September 2002 issue.
- For local info, visit the Santa Barbara County Public Health Department's website, or the Central Coast Immunization Registry's website. Or call Maxyne Strunin with SBCPHD's immunization program at 346-8420.
By the numbers: whooping cough stats
- According to the Centers for Disease Control and Prevention, the incidence of whooping cough nationwide has risen from a low of 1,010 cases reported in 1976 to nearly 10,000 in 2003, and 18,957 reported in 2004, the highest number reported in more than 40 years.
- In 2003, the State of California reported 713 cases of whooping cough.
- In 2004, the State of California reported 911 cases of whooping cough.
- In 2004, Santa Barbara County reported nine confirmed cases of whooping cough; in 2005 to date, there are four confirmed cases, and one case pending. (According to Dr. Elliot Schulman, the number of cases that are never reported or diagnosed may exceed the reported numbers by 10 to 20 times.)
- According to a study conducted in 2000 in upstate New York, the financial cost of each case of pertussis - including days of work lost to care for a sick child, visits to a physician's office, and medical costs - totaled an average of $2,115 per family.
Pertussis vaccine risks
The first pertussis vaccine was developed in the 1930s and came into wide use during the 1940s, when it was combined with diphtheria and tetanus toxoids into the popularly known DTP vaccine. In 1991, the pertussis component in the vaccine was modified for fewer side effects, and the shot is now known as the DTaP. The vaccine is typically administered in four to five shots, beginning in infancy, and currently only to children seven and under. Children who have completed the protocol at the recommended intervals are considered 80 to 85 percent less likely to develop pertussis than unvaccinated children.
Although the risks of contracting the disease are considered far worse than the vaccine, according to the CDC vaccination statement, there is a wide range of possible risks of the DTaP vaccine that range from mild to severe symptoms:
- Mild: fever, swelling, and tenderness (1 child in 4)
- Moderate: nonstop crying (1 child in 1,000), seizure (1 child in 14,000), high fever (1 child in 16,000),
- Severe: long-term seizures, coma, permanent brain damage (less than 1 child in 1 million)
Reactions should be reported to the Vaccine Adverse Event Reporting System and a claim filed with the National Vaccine Injury Compensation Program. For more information, visit the Centers for Disease Control and Prevention website.
Cheri Rae media appearance
Cheri recaps her family's experience with the whooping cough in her column in the Santa Barbara Daily Sound about immunization. She also talks about her experience on the Second Opinion TV show.
Daniel's bout with pertussis
The following is a letter we received from Cheri Rae whose son’s bout with pertussis when he was 7 years old is printed above. The letter is reprinted here with permission.
Just a quick note to keep in touch with you in the New Year. Two years after Daniel's bout with pertussis, he is an active boy who recently hit a grand slam home run for his baseball team. He's practicing with his basketball team and ready for the season to start this weekend. He also gets sick much more often than before, and his alarming, bronchial cough reminds us regularly of the illness that may be gone, but its effects still linger. He sees an asthma specialist for his "reactive airway disease," usually controlled by the two doses of an Advair® inhaler daily, as well as a nightly dose of Singulair® to keep the inflammation and "twitchiness" away from his airwaves. When he labors, we test his breathing, and sometimes must resort to even more medication and curtailed activities.
His reading still isn't what it could be, but with the assistance of a twice-weekly tutor through the past school year, he has made up for much of the concepts missed while he missed so much school when he came down with the cough. When asked to complete a reading prompt recently, Daniel's best friend wrote, "The world would be a better place...if there wasn't any whooping cough."
All of this in a child who never had more than a cold before his bout with whooping cough. All this in a child who was immunized, but attended a school where up to 40 percent of the children were not — a fact we did not know beforehand. I cannot stress strongly enough how parents must do everything they can to avoid this disease in every possible way. Its effects are devastating to the family, indeed the village, for longer than anyone can predict.
Happy New Year, and all best wishes,
Learn more about whooping cough and the vaccines that prevent it.
A kid's disease in a woman's body
Last fall, 52-year-old Lisa Williams (not her real name) contemplated a career change. Considering going back to school to get her master's degree in education, she decided to take a job as a teacher's aide at a local elementary school. She figured the part-time job would give her some classroom experience that would help her make her decision. Her plans were derailed when there was an outbreak of whooping cough at the school where she worked.
Here is her account:
After the Christmas holiday and just two weeks of work at the school, I developed a cough and was unusually tired. At first I thought it was the new schedule wearing me out. But I was coughing so violently I would cry and my blood pressure shot way up; I gasped for breath and felt like I would pass out. The coughing was so hard, so weird, and so depleting.
Finally, I went to the walk-in clinic, and was diagnosed with a sinus infection. I was given a prescription for codeine cough medicine, which made me nauseous and didn't stop the cough. After not getting better, I went back a second time and was told I had an inner-ear infection. By then, I had received the school notice about whooping cough and told the doctor about it, but he just rolled his eyes and said he didn't know about whooping cough in adults.
After another week of coughing, I was beginning to feel psychotic from lack of sleep. At night my hacking sounded like a gunshot cracking through the air. I was keeping my husband awake, so I went to another room.
I saw a third doctor. I said, "This has to be whooping cough, it's not like anything else I've ever had." She said it was possible, since the disease is increasing and I had been exposed to it, that there was no reason to believe it wasn't whooping cough. She prescribed an antibiotic, gave me some breathing therapy treatment, and suggested I take hot showers.
I had never had a cough anything like this before; my bones felt like they were going to break and I was going to faint. Then I would be fine for hours and hours. I had pneumonia when I was in college, and it is the only thing to which I can compare whooping cough. But when you're 19 or 20 you bounce back; at my age, I was exhausted - just taking a shower made me feel like I'd put in a full day's work.
I ate eucalyptus lozenges by the bag, and drank lots of chamomile and green tea. I had to quit my teacher's aide job. Fortunately, I have good insurance, but I lost a job that paid fairly well for Santa Barbara.
It's startling how long it takes to get over this disease. After two months, I'm finally starting to feel better, but my voice is still raspy, there's a residual soreness under my ribs, and it hurts when I cough. At times the pain has been so bad I've wept. I've been too sore and uncomfortable to even wear a bra.
I'm still so exhausted I can only work at my regular job for about three hours. My house is a sty, vacuuming is too tiring; things are falling by the wayside because I don't have the energy to do anything. At one point, I couldn't even cut my toenails because I was so scrunched up I couldn't breathe without coughing. I remember thinking, "If this wasn't so pathetic it would be funny."
I'm not as fit as I could be, but I'm in pretty good shape. I can't help but think, if whooping cough did this to me, what could it do to a baby, a child, or a senior citizen?
Posted: August 2005 with permission, Santa Barbara Independent
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