Two moms talk about pertussis

As told to Maryn McKenna.

Image via the CDC. Infant being treated for severe pertussis infection. She received extracorporeal membrane oxygenation (ECMO), a procedure that can take over the work of the lungs and heart. She also received dialysis to help her kidneys keep working.

Image via the CDC. Infant being treated for severe pertussis infection. She received extracorporeal membrane oxygenation (ECMO), a procedure that can take over the work of the lungs and heart. She also received dialysis to help her kidneys keep working.

The United States is in the midst of an epidemic of pertussis, better known as whooping cough — an infection of the lining of the lungs that makes it difficult to breathe and can be deadly to children. Pertussis used to be a common illness, but it was almost eliminated by vaccination. It has surged back, though, because so many people now refuse vaccines for their children and also because the vaccine’s protection turns out not to last as long into adulthood as expected. Health authorities now recommend that everyone, but especially young women, get a booster dose to protect them and anyone else they live with, including babies too young to be vaccinated.

It has taken a while, though, for news of the need for a booster to spread, and giving the booster to pregnant women to protect newborn babies was not approved until 2011. Heidi Bruch and Michelle Razore, both 34 — who were roommates in college and now live about 15 minutes away from each other in the Seattle area — never heard the recommendation. Heidi gave birth to her second child, Caroline, in July 2010, and Michelle had her third, Natalie, in two months later in September. They had no idea they or their babies were vulnerable to a disease they thought had been vanquished long ago. In conversation with writer Maryn McKenna, they describe the dire events that came next.

Heidi Bruch: I developed a dry, nagging cough about a week prior to my second daughter’s birth. It was annoying but not worrisome. Caroline was born on her due date, July 9, 2010, after a very healthy labor and delivery. Then about two weeks after she was home, she started coughing and. At her 2-week well-baby checkup I mentioned it, but her lungs sounded clear. They chalked it up to infant reflux, which is like spitting up. Then a few days later, at a family dinner, she had one of these episodes. She turned absolutely blue, she wasn’t breathing. My sister-in-law, who’s an ER nurse at Seattle Children’s Hospital, said, “We need to go to Children’s right now.”

We were admitted to the hospital immediately. The infectious-disease doctors asked, “Who in your family has been sick or coughing?” My heart dropped: I had inadvertently given my newborn a potentially fatal disease.

We spent nearly one month there, with a week in the ICU. We watched her heart rate plummet with every coughing episode. They give you antibiotics but after that, all they could do was put her on oxygen and pray that she gets through it.

Michelle Razore: I remember seeing pictures of Heidi’s baby on Facebook. She made it clear that anyone that’s pregnant or planning on having a baby or anyone that’s going to be around a baby should go get their Tdap. I was in my eighth month. So, at my next routine checkup I said, “My good friend from college, her baby is in the ICU. She’s telling everybody to get their Tdap. I don’t know anything about it.” He said, “Michelle, your daughter is not going to get pertussis. It’s so rare.” At that point, it was not determined safe by the FDA for pregnancy.

Heidi: When Caroline came home, the doctors encouraged me to keep her in our room and keep a careful watch on her, which obviously makes you so anxious. We had over 100 days of coughing, all the way through Thanksgiving. I myself coughed for more than 100 days. I actually cracked some ribs from coughing so hard. She came home at the end of August.

Michelle: And I delivered September 24. So I didn’t go see them, but we were keeping in touch on Facebook. Natalie came out perfectly healthy. Then 10 days after we got home from the hospital, she started having these reflux issues. She started developing a cough, and she’d turn a little blue. We went in to the doctor and he took her oxygen levels and was like, You guys need to go straight to Seattle Children’s. Because I knew all of Caroline’s symptoms, I was like, I swear this is pertussis.

They checked us in and said, “We’re going to put her in the newborn ICU because she’s still so young.” In the morning they said, “She’s doing better, we’re going to transfer her to the floor.” We were literally there for five minutes and she had an episode. She went back to the ICU. Anytime we would try to feed her she would start choking and turn blue. Her oxygen levels would drop, her heart rate would drop, her respiratory rate would speed up, everything.

A doctor came in and said, tests for RSV and pneumonia were negative — but your daughter does have pertussis. I’m in tears, freaking out. I sent Heidi a message: We just got diagnosed.

Heidi: Before Natalie came in, Caroline was the youngest baby they had seen with pertussis. The day that we were discharged, a baby passed away because of it. And that baby was older than Caroline.

Michelle: Natalie would cough for hours on end. You wonder if she’s ever going to take another breath. After 2 ½ weeks, she seemed to be doing better. Then all of a sudden, the day after Halloween, she took a turn for the worse. She was on the highest oxygen level she could have. Nothing was working. She got put on a ventilator and that wasn’t working. Then they decided that they were going to try a more intense ventilator, an oscillator. They also did two full-body blood transfusions where they took the blood out of her body two different times and replaced it with new blood. She was so little that the machines for blood transfusions wouldn’t work, so they had to use a syringe. It took eight hours.

She couldn’t keep up her oxygen levels. They sat my husband and I down and said, “We have one more thing we can do.” They wanted to put her on an ECMO, a heart and lung bypass machine, to let her heart and lungs rest. They said, “Your child is most likely not going to survive.”

Heidi: I had gone to visit Natalie in the NICU a few days after she got in there. Michelle was rocking her and I saw her have a coughing episode. I was like, “Michelle, she’s going to be fine. She sounds so much better than Caroline did.” Then when I heard that she was going on ECMO, I remember calling my mom and just crying, just, oh my God. What if they don’t take her home from the hospital? What if I have to bring Caroline around my friend who lost her child?

Michelle: We were on ECMO for about 10 days. The longer you’re on ECMO, the less likely you are to survive. A complication is blood clots in the brain — so every day they would have to come in and do a scan of her brain to make sure she didn’t have any clots in there. She was on dialysis for a couple of weeks. Then we were another probably 30 days in the pediatric ICU trying to get her off of her ventilator. Then once she was on regular oxygen we were moved down to the regular medical floor for probably another month. While we were down there, they noticed that she had fractures over her entire body. From being still for so long and not moving, her bones demineralized and were so fragile that they fractured all over. She finally came home on Christmas Eve.

There were other complications. She had a blood infection in the hospital, so when we came home we had to have home nursing care. Every three hours, a one-hour infusion of antibiotics through an IV. While she was on ECMO, she got a blood clot in her left leg. It turned completely black and they thought they were going to have to amputate it, because the toxins would spread through her body and kill her. The whole front of her leg, all the skin came off. We had physical therapy for the first six months we were home.

Then in January, she was almost walking, pulling herself to stand, and she’d kind of just stand with her left leg on tippy-toe, not wanting to put weight on it. My husband took her in for X-rays; he came home, and he just started bawling. They told him the growth plates in the bones were damaged and her left leg wasn’t going to grow anymore. They told us our best option was going to be amputation. Through my father-in-law, we heard of a doctor in Minnesota who specializes in growth-plate surgery. She had the surgery in May 2012. Now we’re just waiting to find out if it worked.

Heidi: We are both spokespeople now for a nonprofit, Sounds of Pertussis. I actually saw their ad on TV, when I was waking up at night with my cough, before Caroline was hospitalized. If I had known about getting an adult booster, my daughter wouldn’t have had pertussis. I didn’t know I needed it. I had two babies in two different hospitals within two years and it was never mentioned to me. So if I can even prevent one person from having it, or having their child have it… It helps me through the guilt of having given it to Caroline.

Michelle: The hospital where I gave birth now makes it mandatory that every single person is asked to get it before delivery. But it needs to be talked about before you even start planning your family.

Heidi: Michelle’s and my generation, many of us haven’t seen pertussis because it was vaccinated against. It’s more motivation for me to push our stories. Something has to be done.

Michelle: You never think it’s going to happen to you. But what happened to us shows that it can happen to anybody.

Maryn McKenna blogs for Wired and is the author of several books about public health. More at MarynMcKenna.com.

35 thoughts on “Two moms talk about pertussis

  1. When our then 2 month old started exhibiting symptoms of pertussis, we took her to the ER and asked about the possibility she had contracted the disease. A quick glance at our sleeping baby and the doctor dismissed us without even a swab. We took our daughter in repeatedly, begging for her to be swabbed for pertussis. It wasn’t until the 6th visit (the day before the video below was taken) that they finally swabbed her (and only because I brought an audio file of her coughing the night before), but at that point, it was too advanced to make a difference in her treatment. Fortunately for us, our little miracle beat the disease and the odds, but it certainly was an educational experience in patient advocacy and the importance of vaccinations.

    This was my sweet baby at 3 months old in the ICU in Guam (horrifying on so many levels): http://www.youtube.com/watch?v=0iiwZ2_9Vi8

    BUT… I’m so pleased to tell you that she is a happy and healthy 2 year old now! A horrible disease that demands our attention, education, and vaccinations….

    • I have a 2.5 month old myself and hearing your sweet baby cough like that just breaks my heart. That is terrifying. It makes me so mad that people choose to put my baby at risk by not vaccinating their kids.

  2. My son, Gavin, died in January of 2010 of Pertussis. He was 10 weeks old. Thank you both for your advocacy. It’s so important. It is my deepest prayer that no other family needs suffer the way that we did simply due to lack of information… Warmly, Natalie

    • Natalie,
      I read about your son through Digital Photography School before my daughter was born in November 2010. You are the reason my husband and I were both vaccinated and made any family who was going to visit get vaccinated as well. Thank you for using your loss to spread awareness.

  3. Whenever I see pictures or hear of little ones suffering from any illness or disease my hearts breaks. I share the sorrow of those who lost loved ones to this disease and my prayers go out for you and your precious angels. I contracted pertusis at my pulmonologist’s office. I was hospitalized for several days but luckily for me my doctor ran all the needed tests and biopsies. Then started me on several different antibiotics. I suffered cracked ribs and compression fractures of my spine. My wife subsequently came down with it and cracked several of her ribs. Both she and I had been vacinated when were children. Unfortunately, as it was discovered, it is not a life time preventative measure. We did receive the booster shots after the fact; hopefully it will keep this from recurring. I was 65 and my wife was 56 when this hit me in 2011 and my wife in 2012. It is so very hard to picture anyone especially an infant or small child having to suffer through this.
    May God bless all of you who are actively campaigning to alert everyone to the need for the vaccinations against pertussis.

  4. Thank you for sharing your stories. It is so very important for people to be informed about Pertussis. I’d also like to offer my sincerest condolences to Natalie Norton on the loss of her son Gavin. Not enough is being done to inform the public that they need an adult booster. I also think the recommendations should be broadened to include all adults and not just people who are around infants. Anyone can be around an infant…at church, at school, a grocery store. etc. I am an adult and mother of four who contracted pertussis just this past June (2013) in Texas and I am still recovering, as is my one year old daughter. The name is deceiving, but as you all know only too well, it is a debilitating illness that can easily be fatal to an infant. I keep sharing my story on FB with friends in the hopes of helping at least one child. Wishing all of you peace and healing and thank you for sharing your stories.

    SIncerely,
    Cathy

  5. A couple of years ago I saw a little boy, maybe aged 2 or 3, who was in a wheelchair with lots of medical equipment and a trach (sp?). He was a cheerful kid who was watching the other kids play around him and I felt bad that he had to be confined like that. I heard his mom telling another mom that he had pertussis. I had already made the decision to vaccinate my kids but I was even more resolute after I saw that. It’s just not worth it.

  6. I had pertussis as a young teen, about ten years ago. For a long time no one even thought to think that it might be whooping cough because I had been vaccinated, and because it was so rare then. We’d only even ever heard of it from books like Little House on the Prairie. It took until I actually started “whooping” for it to be seriously considered and a diagnosis from a doctor quickly followed. Thank God I was okay in the end, but I coughed for months during the recovery process. The doctor also had everyone in the family on medication because they’d all been exposed as well.

  7. Thank you for sharing your story and getting the word out. I am an RN and work in pediatrics. It is heartbreaking to see babies fight pertussis, and watch the parents’ as they see their little one have episodes. During my pregnancy with my fourth child, I asked my OB to tell my husband he needs to be vaccinated as well (coming from her I knew he would do it right away lol). I wish news media would do a story or twenty on pertussis and the importance of not only children but also adult vaccinations!
    God’s Blessings to those mommies here who have gone through this with their babies. I’ve seen it many times as a nurse and it still brings tears to my eyes every time.

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  9. I thank you so much for sharing your stories. I had heard about the booster vaccine, but have not really taken it that seriously. Your stories, have just 1000% convinced me that I will get the booster and after reading the comments—ensure that my husband does also. And my deepest heartfelt condolences to Natalie—it hurts my heart to hear about that kind of loss.

  10. I have seen claims (unsubstantiated of course) that 90% of case of pertussis is in vaccinated people. This strikes me as unlikely, but I am having trouble navigating the interwebs for accurate info. Do you have a link to a study of recent outbreaks that breaks down the vaccinated from the under/not vaccinated victims? Essentially what these people are implying is that you will get whooping cough whether you get the vaccine or not.

    This story broke my heart and I would do anything to help prevent my child, or anyone else’s child, go through the same thing.

    • Because there are more people in numbers who are vaccinated than unvaccinated, there will almost always, in an outbreak, be a higher NUMBER of vaccinated individuals who are ill than the NUMBER of unvaccinated individuals. When you look at the percentage of cases, then, it will sometimes appear that a higher percentage of the ill cases are of vaccinated people. However, this is a deceptive way to look at the outbreak. More importantly, you should look at the RATE of illness in both groups. When you look at RATES — what percentage of vaccinated people became ill with the disease versus the percentage of unvaccainted people who became ill — it becomes clear that those who are not vaccinated are at MUCH higher risk both for contracting the disease and for poorer outcomes. (Even if a vaccinated person contracts the disease, they tend to have a milder course of it and better long-term outcomes.) However, the fact that vaccinated individuals can contract diseases such as pertussis (especially because the vaccine’s strength wanes over time) reveals how much of a threat intentionally unvaccinated individuals are to the entire community. When a person decides not to get vaccinated, they are putting everyone in the community at risk, whether others are vaccinated or not.

      • Thank you! This is what my gut says, but I like to be able to back it up when “arguing” with people who don’t vaccinate.

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  12. My grandson was born nearly a year ago. A month before his birth I had my annual physical. I had heard about the need for a booster; I asked my doctor and she was able to give it to me right there and then. I am glad I knew about it.

    • It is true that not being vaccinated will not guarantee that a person will not get the disease. As I noted above, that’s why it’s so important that EVERYONE in the community who can be vaccinated is vaccinated, so that they contribute to the herd immunity that makes it more difficult for a disease to travel through a community. (More on herd immunity: http://www.vaccines.gov/basics/protection)

      No vaccine is 100% effective for 100% of people who receive it. Rates of effectiveness and rates of waning immunity vary by vaccine. What is certain is that a vaccinated individual has a much higher level of protection than a non-vaccinated individual for all the disease for which vaccines exist, and even if the vaccinated person catches the disease, their course of that disease is far more likely to be milder and to have better long-term outcomes.

  13. Thank you all for telling your stories. So sorry for those that have lost their children to this disease. My heart aches for you, Natalie. My son was diagnosed with RSV at 5 weeks. We were rushed by ambulance from the pediatrician’s office to the Children’s Hospital for one week. My baby is now 9 1/2 months old and doing great, but still has coughing episodes and we do breathing treatments every couple of days. We were told that the RSV would be in his lungs for 2 years. We have got to protect our children. I was given the shot in the hospital after delivery and my husband, a few weeks later. I am asking my parents to do it now. One shot could save some little ANGEL that you loves life.

  14. Thank you to all the mothers who’ve shared their stories, whether it was in the post above or in the comments. Sometimes, as a nurse, it can be quite difficult to educate patients and their families onthe importance of vaccinating. However as a mother, one on one with another mother, you have the ability to connect on a personal level and your story is worth hours of education and teaching. Please continue to speak out and advocate for families to vaccinate and protect the children. Your stories save lives.

  15. I was still in high school when i got pertussis (2005 or 2006). the doctor was certain I had pneumonia… but x-rays told him different. Aunt wanted me to go to the doc’s sooner but it was “just a cough” that i had for like a month and didn’t want to miss school….even though i was having coughing episodes really badly. I went on a tuesday… the night before I had preformed with the marching band, and knowing i needed to do the routine, coughing fits weren’t covered up. Wednesday my aunt called the school. nothing was sent home to the district though grades 5-12th had been gathered that monday night, and younger children were brought to watch their sibling’s preform. I remember clearly after a day of tests, the look on my doctor’s face when he told me I had whooping cough, and that I was very contagious. To my aunt and to my doctor I was an odd ball, the first either had heard of someone getting the infection even though I had been vaccinated when I was born.

    Just this past year I got re-vaccinated for it.

    • Yes, it seems that many were surprised by the waning immunity from the vaccine, although from what I’ve read, the same happens with the native infection.

  16. I am so glad you are making everyone more aware of whooping cough. Both my kids had whooping cough in the winter of 2011-2012. They were and always have been up to date with their vaccines. Because they were vaccinated, doctors dismissed the possibility of whooping cough for weeks. They were treated for pneumonia and bronchitis and only got worse. Both kids coughed for more than 100 days and missed many weeks of school. I believe in vaccinations but I do want everyone to know being vaccinated will not protect you 100%. Look for the signs, especially in young children, and get treated early.

  17. This was so eye opening. I have a 1 yr old and 6 mo old at home and I honestly wish I had been shown this story in the hospital when I had my girls. Please continue getting the word out. I am going to get the vaccine as well as my husband and my whole family. Thank you so much for sharing. Prayers for the girls and their families.

  18. I was vaccinated last year before surgery and was exposed to pertussis at work, a senior staff member and their family live next to a vaccine refusing family in Marin. I have been sick for over 5 weeks now and have just been put on medical leave for a month to recover because of pretty terrifying apnea paroxysmal attacks every night. My lungs are crackling now so in worried about pneumonia. Daytime coughing is lessening as long as I don’t speak or laugh or bend over. I haven’t slept for more than an hour since I fell ill. Supposedly my vaccination afforded me a light case of pertussis but I certainly don’t feel this is true. I feel so badly for children with this disease, and the parents who have lost their babies.

  19. Our baby was diagnosed when he was three weeks old. We spent three days in ICU and is doing great. He is now ten months old and hasn’t cough e for about a month. I’m a firm believer in immunizations! The people who don’t want to get the booster should have to see any baby struggle with this disease. Our baby was one of the lucky ones to pull through. My deepest sympathies to those parents who weren’t so fortunate.

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  21. I am a grandmother in my early sixties, and I wonder if my own experiences would be instructive:
    1) I received the DPT immunizations as an infant. They were well established by the early 1950′s.
    2) The belief prevailed that if you had taken the shots, or had the disease itself, you had a lifetime immunity.
    3) My two children both received all the recommended shots in the 1970′s/80′s.
    4) My older son came down with pertussis when he was about 15, in the ’90′s. His primary care physician did not know what it was, had never seen a case. He was seen by a pediatric pulmonary specialist at a major hospital. She diagnosed it immediately after seeing him in the throes of one of the coughing paroxysms.
    5) At that point, a fairly large number of young teenagers in our Eastern city came down with the disease. It was thought that they had received a weak or ineffective dosage of the vaccine as infants.
    6) It was not until LAST YEAR, 2012, when both of my daughters in law were pregnant, that I learned that the childhood series, or even having the disease, does NOT confer lifelong immunity. I found out about the TDaP shot and immediately got one, as did the other adult members of the family.
    7) If you are uninsured or underinsured, you may be able to get this shot from your local health department at little or no cost. Health professionals are serious about fighting this disease. Being in that dreaded “elderly” stage of life is apparently not a barrier to getting the vaccine if you’re healthy.

    I am horrified that babies are dying and being put at such dreadful risk, and that young families are suffering, from a disease that we had all but eradicated.

  22. First, I want to say how sorry I am for those of you who have lost babies to this terrible disease. I am an RN and I work in Postpartum. I wanted to let you know that a lot of the OBGYNs are now giving the vaccine to their pregnant patients and then, after the delivery, we at the hospital offer and encourage every mother to receive the vaccine before they are discharged. We educate and encourage them to receive the vaccine and I always include the fathers and other family members in the education. I would say that most of the mom’s now end up receiving the vaccine during their pregnancy or after their delivery. I don’t know if other hospitals are doing what we are doing but I imagine they are. The commercials on TV are helping too. Now the moms know what I mean when I say the Whooping Cough vaccine. I pray this is one vaccine that most moms will get and we can start to dramatically decrease the incidence of this horrible disease. All the staff was required to receive the vaccine and I am very glad I did. I would encourage everyone to get this vaccine.

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