As told to Maryn McKenna.
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.