Last July 4, when I was about to give birth, I came down with a cough. No stuffy nose, no cold, no fever. Just a dry, annoying cough. Five days later, our beautiful and healthy daughter, Caroline, was born. By the time I got home from the hospital, my cough was worse. I'd have episodes where I'd cough for a minute or two straight, and then not at all. When I finally woke my husband Jon out of a dead sleep as I was gasping for air, he begged me to go to the doctor. (I had never really coughed around the hospital staff, so they didn't know I was sick.) I told him that with a newborn and a toddler at home I didn't have time, plus I didn't feel sick in the least. But he insisted, and stayed home from work with the girls while I saw my doctor. Since I wasn't showing any cold or flu symptoms, and tests indicated my lungs were getting enough oxygen, my doctor determined that the cough was a mild case of asthma and he sent me home with an inhaler, which I hadn't needed since high school.
When Caroline was around 2 weeks old, she started developing a dry cough, especially following feedings. She even vomited a few times. I called my pediatrician; the nurse told me to keep an eye on Caroline and to call back if she threw up more than three times in 24 hours.
At Caroline's 2-week well-baby checkup, I mentioned that she had been coughing and gagging during feeds, her face turning purple as if she were choking. I asked the doctor to listen to her lungs, which checked out fine. He said that the coughing and gagging was most likely a result of reflux, which is very common in babies, and warned me that it would most likely get worse before it got better.
On Sunday, August 1, we went to my parents' house for dinner. I was feeding Caroline when she started to cough and turn blue around the mouth, clearly not receiving oxygen. Thankfully, my sister-in-law was there—she's a nurse at Children's Hospital in Seattle. She took one look at Caroline and told me that we needed to take her to the ER.
At Children's they ran tests for respiratory syncytial virus, or RSV, pneumonia, and pertussis, more commonly known as whooping cough. Caroline tested positive for pertussis. The doctors immediately asked if anyone around her had been sick with a cough. My heart sunk. I told them that I had. It was quickly determined that I didn't have asthma, but pertussis—and I had passed it on to Caroline. I felt guilty, knowing this had been preventable, but my main thoughts were about how to get the ball rolling and fix this.
We were quarantined on the medical floor, where Caroline's heart and oxygen levels were monitored 24/7. They started us both on antibiotics, which only made us not contagious—the drugs didn't actually cure the disease. On day two of our stay, Caroline's started to cough more often.
When a baby with pertussis coughs, the cough starts off silent, which is a result of not being able to get oxygen. She turns blue, her heart rate drops to extremely low levels (Caroline's would fall from an average of 165bpm, to the 50s) and oxygen saturation levels plummet, causing monitors to set off alarms and medical staff rushing in to assist. It looks as if the child is choking to death, and in reality, she is. The classic "whoop" sound results when she finally catches that little breath and gasps in. There is nothing doctors can do for these children, except be there to support them with oxygen, which doesn't do a whole lot if the baby isn't able to breathe it in. I found myself at her bedside with every cough, whispering, "Please take a breath. Please take a breath, Caroline."
She required too much care for the medical floor, so Caroline was transferred to the infant ICU, where we spent a week praying for the worst to pass. We were told that pertussis peaks and then plateaus for a while before you see any sign of recovery—it's a long road. It's sometimes referred to as the 100-day cough. But pertussis is deceptive: Between coughing fits, Caroline would seem completely healthy and her vitals would maintain normal levels.
Once her fits were less frequent, she was sent back to the medical floor. Jon and I were relieved to see her leave the NICU, but nervous to not have her NICU nurse right there all the time. We also knew that we could still be in the hospital for a while, and we were.
After the worst was over, we were told that Caroline's case was considered mild. That sounded crazy to me. Watching her heart rate plummet and watching her turn blue was beyond terrifying. We were told that many babies with pertussis need to be fully intubated or put on full respiratory and cardiac bypass. We also learned that it would not have helped if we would have brought her in a few days before we did. This was a relief to me. Actually, it was more than a relief: It was a wake-up call that Caroline got sick for a reason and I needed to spread the word to other parents. I had had no idea that I needed a pertussis booster as an adult—despite having two babies, at two different hospitals, in a little over two years.
First, I went in and spoke directly to the director of obstetrics at the hospital where I delivered Caroline. I told her that women should be offered the Tdap booster (for tetanus, diphtheria, and pertussis) when they're discharged after giving birth. She agreed, though I'm not sure if policies have changed. She said that they tell patients about the booster at the 6-week postpartum checkup, but that's too late, because most infants receive their first pertussis vaccine at 6 weeks. So moms' needs to be discussed when they're pregnant or thinking about getting pregnant.
Meanwhile, an all-staff meeting was held at our pediatrician's office and, because of Caroline, they now include information about the adult booster as part of the 2-day well-baby checkup. They also bring it up at any pre-birth meet-and-greets and explain that all family members and caregivers should get the booster, too.
Caroline was discharged on August 24, nearly a month after being admitted. I expected her cough to last through October, but we heard the classic whooping sound almost until Thanksgiving—more than 100 days. We feel blessed that our story has a positive outcome, but watching Caroline fight for her life was something I will never forget, and it has changed our lives forever.