Our Pertussis Epidemic: Why, and What You Can Do

Note: A version of this essay has been syndicated on BlogHer.

Since school began in August, my children have brought home five pertussis (whooping cough) booster shot information sheets, and one pertussis exposure notice. These notices shocked me - I've gotten so used to being cocooned from vaccine-preventable disease due to the success of our national vaccination program -- and they should shock you, too -- into action, into getting your Tdap booster if you haven't already, into taking pertussis seriously.

Why are we seeing the worst pertussis epidemic in 55 years? Health officials says it is partially due to the cyclical nature of pertussis. But they also say it's due to parents' autism-related fears about vaccinating their kids, as NPR reported yesterday -- even though theories on vaccine-autism causation have been repeatedly dismissed -- because organizations like Generation Rescue are still flogging the vaccine theories (if you want to see how vehemently the anti-vaccination movement continues to defend its misinformation, check out the 430+ comments on my recent post, Why My Child With Autism Is Fully Vaccinated).

These vaccine fears, and the actions parents take on behalf of them, such as signing philosophical vaccine exemptions, have a real and deadly effect on public health. As reported by KQED's Gabriela Quirós, "...in states where getting an exemption is easy, such as in California, the rate of whooping cough was at least 50 percent higher than in states that made it more difficult for parents to opt out.**" (You can see the personal exemption rates for your child's school at: http://www.baycitizen.org/local/counties/immunizations/ -- only schools with kindergarten students are included.) This is why California is considering cutting back its immunization exemptions.

And this is why California will mandate pertussis vaccinations in all middle schoolers, starting July 2011, an action that pleases the anti-vaccination movement not at all:

The parent in this video, Moira Giammatteo, ably demonstrates how the anti-vaccination movement stokes viewers' righteous indignation -- she is complaining that she doesn't want her kid being "collateral damage" for other kids' health -- but she has already been accommodated, she had the right to take a personal exemption, whereas the children exposed to pertussis via their unvaccinated peers have been given no such choice. Yes, her child would have stay home during outbreaks -- that is the only safe option for any child exempt from immunization, whether for medical or philosophical reasons. Besides, who has ever heard anecdotes about middle schoolers regressing into autism? Ms. Giammatteo's claims are rooted in absurdity. I also think that if she had any real-world experience with pertussis victims, she might reconsider her message.

I recently participated in a pertussis/whooping cough education conference call, arranged by Every Child by Two (www.ecbt.org). The participants included Dr. Ari Brown, pediatrician and author of Baby 411, spokesperson for American Academy of Pediatrics, and medical advisor to Parent Magazine; Danielle Romaguera, mother of pertussis victim Gabrielle "Brie" Romaguera, Amy Pisani from Every Child by Two, and Christine Vara, blogger from ECBT's Shot of Prevention blog.

We talked about what pertussis is, what its symptoms are, and why it's so important for everyone -- not just children -- to get a pertussis booster to protect the vulnerable, especially infants too young for vaccinations. We also listened as Danielle Romaguera told us about the heartbreak of her daugher Brie's delayed pertussis diagnosis, prolonged suffering, and eventual death from an increasingly widespread but preventable disease. Unfortunately, stories like Brie's are becoming more common.

Dr. Brown opened, with a comprehensive pertussis information breakdown:

Tdap Boosters: Do You need to Get One?

The CDC has a recommendation in place since 2006 that people who are around newborns and infants - health care providers, parents, grandparents, or siblings -- recommended to get a pertussis booster shot -- Tdap. it's only been available since 2005, and is for anyone from age of 11 - 64. It's the Tetanus booster we're used to getting every 10 years, combined with the new pertussis booster. Before 2005, the last time any of us got a whooping cough booster was when we were five years old -- which means if you can't remember when  you got your last tetanus booster, then you probably didn't get the Tdap that covers whooping cough. And what we know about whooping cough vaccines is that your immunity only lasts ten years; it's not a forever immunity. Same thing with immunity from catching the disease itself - it may wane.

So, giving a booster to adults and young adults who are going to be around newborns is an important form of protection, but unfortunately that message has not gotten out there, and it's not being done routinely. There are health care providers who take care of adults who do offer the Tdap. There are obstetricians who routinely give the Tdap to mothers right after delivery. But it hasn't been universally adopted. I'm a pediatrician, I don't take care of adults. But when parents come into my office and ask me what they can do to protect their child, and I recommend the Tdap, this is new information that they're not hearing from their adult providers, and then they need to go back and talk to their adult providers about it.

The more we can get the message out about Tdap boosters for teenagers and adults, the better.

What Is Pertussis?

Pertussis is caused by a bacteria. It's called because "Whooping Cough" because some, not all, patients have a characteristic "whoop" at the end of their coughing spasms. The bacteria attach to the little tiny hairs (cilia) that line the respiratory system, and produce a toxin that paralyzes the cilia so they can't do what they normally do, which is to move secretions through your respiratory tract. The bacteria also inflame your respiratory tract so it gets swollen. Basically, you have very poor clearance of your lungs, and the secretions in them.

The three stages of whooping cough:
  1. Intially, you have common cold-like symptoms: Cough, slight fever, runny nose.
  2. About two weeks later, severe cough spasms start -- up to 15 - 20 per day, mostly at night , and the characteristic "whoop" sound, which occurs at the end of a spasm, appears -- and people start to realize their illness is more than a cold. Unfortunately infants may not have the "whoop," what happens to them is that they just can't catch their breath -- which is called apnea. Their faces turn red, and their lips may turn purple or blue, because they can't catch their breath. Older persons don't necessarily get the whoop either; it may appear as a cough they just can't seem to shake. This stage can go on for six weeks.
  3. Recovery and coughing less; this can last for six to twelve weeks.
The length of these three stages is why Whooping Cough used to be known as the "100 day cough."

Because immunity is not life-long, one of the key groups who get whooping cough is adults. And when they get this disease, they often initially think they have a cold they can't shake, or that their allergies are acting up. Sometimes they go to the doctor, but many times they just blow it off. Those are the people who are walking around spreading this disease, because the first three weeks is when they are contagious, and pertussis is spread through respiratory droplets. It's the bacteria in the nose, mouth, and throat which then end up on surfaces, and if someone then touches that surface, and then touches their mouth or nose, they've just acquired that disease.

Pertussis Can Kill Babies

So, in an older child or an adult, pertussis just may be a cough. But in a baby, and particularly in a baby under six months, pertussis can kill.

And that is why we're trying to protect this really vulnerable population. Those are the kids who are most likely to be admitted to the hospital. The number one complication of whooping cough that kills kids is pneumonia, but mostly they just can't catch their breath. The sad thing is that most of these kids, who are likely to be most affected, are also the ones who can't be vaccinated -- especially infants under two months who haven't even had their first vaccination. Seventy percent of the time, the person who exposes the child to the disease is someone in their own household -- these are kids who mostly aren't going to day care yet, these are not kids who are getting it from their three-year-old brother because he's been vaccinated -- they're getting it from their parents, grandparents, or child care provider. Those are the people who are spreading the illness to these babies.

The only way we can protect babies is by vaccinating the people around them.

The more educated parents are on this issue, the more empowered they can be to ask their provider for the Tdap/whooping cough booster shot. If you can't remember whether or not you already got it, you can ask your doctor to check your records. You don't necessarily have to go to your doctor for your Tdap shot, though; some pharmacies and even grocery stores offer the shot.

Questions from callers:

Caller: Is there any danger in being over-vaccinated? In getting the vaccination if it's been less than 10 years since your last booster?

Dr. Brown: That's a good reminder that adults are supposed to track their own vaccination records, not just those of their kids! There's probably an app for that. But right now, since the Tdap vaccine is only five years old, the CDC recommendation is to only get it once.

But if your last tetanus booster was a plain Td (tetanus-diphtheria), and you want to get Tdap after delivery, the recommendation is that you go ahead and get it, even if your Td tetanus booster was as recent as two years ago.

Caller: Why was Tdap developed? What was the motivation to develop it?

Dr. Brown: Technology. No one had ever been able to develop a good adult vaccine -- our immune systems don't mount the same kind of response as kids' do, immunity wanes over time.

Caller: Does it take a while for immunity to develop after the shot?

Dr. Brown: Yes, which is why the recommendation is for adults to get their shots at least four weeks before they'll be exposed to an infant, because that's how long it take for immunity to develop -- for everyone except pregnant women. Non-immunized pregnant women should get the Tdap immediately postpartum. They shouldn't routinely get the Tdap vaccine, though some medical organizations will recommend it if they think the risk to the infant is high -- it's just not the standard recommendation. So, ideally, this should be covered during a pre-conception visit with your OB -- which, since 50% of pregnancies are unplanned -- is the visit you should have with your OB if you have any inkling you might be becoming pregnant any time in the near future! It's also a good time to talk about other vaccinations you may need -- chicken pox, rubella, etc.

You also need to get other family members vaccinated -- more than four weeks before the baby is born.

Danielle Romaguera's Story

Danielle is one of the first stories on the VaccinateYourBaby.org victims page. She had a baby named Gabrielle in 2003, before the new recommendation for adults came out. She is committed to making sure others don't suffer as her family has. She has since had three wonderful boys, and has been very careful with them, in terms of who sees them and who they were exposed to as infants.

Danielle Romaguera: We had a daughter, Gabrielle "Brie" in January 2003. She came home healthy, was home for a month, then got a cough. At the time, everyone was really concerned about RSV, so we took her to the ER. She tested negative for RSV, so they told us she just had a cold and we should go home. That was a Saturday. By Tuesday, we were back in the pediatrician's office, they gave us a breathing treatment, still told us it was a cold, and sent us back home.

On Wednesday evening, about 1 - 2 AM, we noticed she was having trouble breathing, and we took turns staying up with her all night, even extended her neck so she could breathe. The next morning we went back to the doctor. While we were there, the doctor noticed that she turned blue around the lips during a coughing spell, and she passed out. The doctor sent us to the hospital immediately, which was just down the street. She had several more episodes there, and when they finally got her oxygen level, during a coughing spell, it registered at 24%.

They then airlifted her to a hospital in New Orleans that had a pediatric intensive care unit. And when we got there, the first thing they did is go through a list of things that could possibly be wrong. And the very last thing they told us was pertussis. I asked them what that was, and they said it was whooping cough, but that they never see it anymore. So they went through their long list, and tried to treat things like severe reflux.

She kept having episodes, she would pass out, and then they'd bring her back. She ended up on a ventilator, and then on life support. But before they put her on life support, they brought in a bunch of doctors, and when the pediatric infectious disease doctor walked in, she listened to her cough, and said, "This child has pertussis." They sent off the culture and started treating her with antibiotics.

But by that point, the disease had taken over her body and she was on life support, for approximately thirteen days. She was on a heart and lung machine that did those functions for her so that her body could heal. But then her organs started to shut down, she started to get fluid in her third space -- she looked like the stay puft marshmallow man -- and she leaked fluid from her pores. Then she had a brain bleed -- first on one side of her brain, and then the other. That's when they recommended we take her off life support. Once they took her off life support, she survived for about thirty minutes.

And I know someone asked why we needed the booster. When Bree was born, I didn't have enough antibodies to pass to her -- my vaccine had worn off.

When Brie was in the hospital, there was another little boy who also had pertussis. And at that point, they told us that the CDC had come down, and that they were starting to see outbreaks of pertussis in different parts of the country, and that they were going to need to develop a booster.

Also, when we were in the hospital and before they realized it was pertussis, she hadn't been in an isolation room - she was just in her own room. After they realized it was pertussis, they had to call back every child, every nurse who had been on the floor during the three weeks we were there, and everyone in our own family had to be treated with antibiotics. Because what we found was that a doctor had been infected because he'd been in the room when she coughed, one of the nurses on the flight crew was infected, there were several nurses from the pediatric intensive care, one of the nurses from the neonatal intensive care who just happened to be in the room with her when she coughed -- she came down with pertussis. We used so much antibiotics that they had to call in another truckload for the hospital.

When Brie passed away, she was just 52 days old, and just a few days shy of when she could have received her first DPT vaccine.

We never discovered where she contracted pertussis. She went to two places: Her doctor's office, and her grandmother's house. She only really came in contact with family members. I was a high school teacher before she was born, and I think though we've never confirmed it, that she got it from me.

Christine Vara from Shot of Prevention: Sadly, we're adding more parents for our victims page. You can see an interview with Katie Van Tornhout (http://www.vaccinateyourbaby.org/why/victims-callie-van-tornhout.cfm) on our page.

It seems as thought there are a million cases of pertussis circulating during any given year, but most folks don't realize they have it or they think they have bronchitis so they treat it with the same antibiotics we would have used to treat pertussis, so those cases are never identified, at least not before they've already transmitted it to someone else.

Dr. Brown: It is definitely very underdiagnosed. The best test for whooping cough requires a nose swab, and it's not a very pleasant nose swab either as it goes right to the back of your nose where it attaches to your throat. Because there's been such an upsurge in pertussis, you no longer have to send it to a state lab; lots of private labs are handling the tests. But many people are not tested -- and that means we've underestimated how common this disease is.

Christine Vara: Danielle's story really underscores how many health care workers get infected, and how much preventative care is needed for new mothers, for example Katie Van Tornhouse was never offered the vaccine, nor were our other victims' families. So parents really need to be proactive in requesting these vaccinations.

Open Questions:

Arlene Remick with the National Healthy Mothers Healthy Babies coalition (http://www.hmhb.org): We do have information on whooping cough on our site, but I have found it really, really challenging to describe whooping cough -- so many women absolutely don't know about it. Do you have recommendations for how to communicate with women about this condition?

Dr. Brown: You need to just explain it in English. I hope that's what I did: It may look like a cold; it gets worse, it doesn't get better; and you need to be aware of it -- if you do think you're sick, you need to see a doctor.

Sometimes people get it confuses with croup, but croup is a virus, and even thought it also makes a funny noise when you cough, it's not the same.

Amy Tuteur, Skeptical OB Blog: What about the logistics of getting the vaccination. Who pays for it, how much does it cost?

Dr. Brown: Usually when a recommendation comes out from the CDC, by six to nine months, all insurance companies should be covering it. And the CDC's Tdap recommendation came out more than four years ago.

The recommendation right now is that if you suspect pertussis, you treat it. Texas and California are both experiencing whooping cough outbreaks -- in Texas, the health department has recommended that doctors not wait for the results of the pertussis test -- they want the test done anyhow so they can track the disease, but they also don't want doctors waiting to treat the disease.

We do see whooping cough cycles, they usually happen in three to five years, and the last major outbreak we had was in 2005. So we're due, and it's here. We need to be aware of that.

Shannon Rosa: I'm from Squidalicious.com -- I have a child with autism. I mostly talk to people within the autism community, which is pretty polarized on the vaccine issue, as some of you may know. But, in talking with people in general, what is the strongest shortest message we can get across about the importance of vaccinations?

Amy Pisani: We have a lot of difficulty with the numbers game, but you can't really think about it that way because every single child that contracts one of these disease is a catastrophe, because it's completely preventable.

Also the science has spoken on the issue, really hope that we move back towards science. Children are still dying, and that is in part because of the misinformation that has been given out about autism and vaccines, and I would hate to see any parent with an autistic child then have a child with a vaccine preventable disease.

Dr. Brown: Communication strategies and PR: The message that works for me (and I've tried all of them in my practice) is to say "I wouldn't do anything differently for my child. I protect my kids, and that's what I would do for yours." No one can argue with that -- it's emotion, and it's the truth. I want to protect your child just like I protect mine.

We're such a jaded group of parents -- we have not had to suffer through these vaccine-preventable diseases. Now they make headlines when they happen, because people have never seen them before.

I used to say "Just talk to your own parents, because they've actually lived through these dieases," and they remember being stuck at home during polio outbreaks -- but the problem is that this is the same generation who sits back and watches Oprah and tells their adult kids, "Did you see that thing on Oprah about autism and vaccines?"  so I don't say that anymore, because the grandparents are so influence by the media.

That's the great irony of the success of vaccines, is that people are unfamiliar with the diseases they're meant to prevent.

Danielle Romaguera: When people find out that our daughter passed away from pertussis, often their first reaction is "that doesn't exist anymore" or "how did that happen." When we told my grandparents it was pertussis, they were petrified, because they had lived through outbreaks. So I find that when we tell people out story, then people's eyes open a little bit more.

I have a very good friend who has triplets, and one of her triplets has autism. She vaccinates, because she lived through Brie with my husband and me -- she saw what can happen, and she saw how much my daughter suffered, and I think that a lot of people I come into contact with think pertussis couldn't happen to them, and if it does, it's just a little cold, it's not something that could actually kill their child.

My husband is a professional photographer, and when we were in the hospital with Brie, I told him, "Don't you dare take a picture of her like this," because I really thought we were going home. I thought I'd never want to remember that time of my life. Now, I wish I had pictures, so I could show them to other parents so they could see what can happen. So, in my case, the stories help.


**Disclosure: My husband works with Gabriela Quirós, however he had no involvement with her vaccination story.


  1. Anonymous1:33 PM

    i have had the sad experience of caring for several, beautiful newborns who were brought to my NICU diagnosed with pertussis. It is truly one of the harder components of my job. Nothing is more heartbreaking, truly to tell a family ther once healthy, perfect newborn is at death's door because of exposure to an easily preventable disease. One case years ago was a result of older siblings, who were not vaccinated. I can't even imagine that mom's grief when the realization came to her but I did witness it.
    I bitch and moan over the inconvenience of either getting a booster or being forced to wear a mask in my workplace but ultimately I am on the side of my fragile, vulnerable tiny patients. I got the booster and I urge anyone, siblings, parents, caregivers, teachers, grandparents to get their pertussis boosters updated as well for the sake of the babies in their lives. As of the last report I checked NINE BABIES in California have died this year as a result of pertussis. Adults and children get sick but they get better, it's the babies who die, the babies who have no protection against this preventable disease.

  2. Thanks for this post - until I read this, I had no idea that the booster had been available for FIVE YEARS. I have a 14 month old who had been properly vaccinated, but my husband and I were never told that we might need a booster....and now *I* have pertussis! I'm certainly not adverse to getting shots - I'd have signed us both up in a second if I had any inkling that our immunizations from childhood weren't holding. Thank goodness I didn't get sick until AFTER my son was immunized!

    Everyone: whether there is an infant in your life or not, please get the booster! I'm a work at home mom and have no idea where I might have gotten exposed...this germ is out there, and you can spread it to someone vulnerable. I can say that it's not great fun to have it, but I'm just sick - sick - to think I might have passed it to someone who hasn't been/can't be vaccinated.

  3. Stephanie in Asheville6:23 AM

    Does anyone know what the chances are of contracting pertussis even if you are vaccinated? Both of my girls are fully, thoughtfully vaccinated, but I'm pretty sure they both had undiagnosed pertussis within the past year. The nighttime cough was terrifying...my older one sometimes couldn't take a breath without coughing. The dregs of it lasted for months.
    Thank you for this reminder. I'll be hunting down some vaccine for myself.

  4. Laura, thanks so much for sharing your story, and for speaking up on behalf of your "fragile, vulnerable, tiny patients."

    Diana, I'm so glad the information was helpful -- I hope you recover as quickly as possible.

    Stephanie - so sorry your girls were so sick. There is a definitive test that can be done for pertussis, if (heavens forbid) they ever become sick like that again. The pertussis vaccine isn't 100% effective, but usually infections in vaccinated kids happen as teenagers, when their age 10 booster wears off.

  5. I've said this in other forums, but my 4 year old was diagnosed with pertussis after a FIVE WEEK delay (including a cross-state airplane trip to a wedding). It NEVER crossed our minds that he would get it because he had been vaccinated for it & I assumed that gave him 100% immunity. NOT SO, as you have said. He was only 4, so this is not a case of needing a booster, just that he was one of about 20-25% of kids who the vaccine is not effective for.

    No one in our family was aware of the particular symptoms for pertussis - we thought he had possibly developed asthma. We unintentially exposed hundreds of people directly to pertussis & have no idea where he got it in the first place.

    I've tried to help spread the word on this issue since then.

  6. I, too, have cared for babies and children who died fro pertussis. It is horrible. I have also cared for a kid who in now blind from measles. I think people who encourage others to not vaccinate should be charged with attempted murder. People talk about "nature" as though its all fluffy bunnies. Go to any historic graveyard, and you will see for every woman, a row of little headstones, the babies that died from diseases that we can now PREVENT and sometimes treat.

    I found your blog from SFGate- the woman who was worried that a child had touched her butt obviously has her own diagnosis, or is an idiot. All kids have a a certain cluelessness about their own space, and kids who also have autism, well, yup. She was a weirdo to not get it.


Respectful disagreement encouraged.