I Don't Want Anybody Else to Walk That Road — Katie’s Story
We believe when people share their stories, it helps all of us identify and address the health barriers affecting our own communities. This is the story of Katie Van Tornhout’s daughter, Callie, who died at just 37 days old after contracting pertussis.
Katie Van Tornhout was thrilled when she got pregnant with her daughter. She and her husband, who live in rural Indiana, had already experienced a long road to parenthood that included five years of trying and four miscarriages. Callie, their Christmas miracle baby, was born two months early, on December 24, 2009.
“She was a spitting image of her father,” Katie shared with us, adding with a laugh, “It was almost creepy. I brewed this baby, yet she looked just like her dad.”
Callie had to stay in the NICU for 12 days before going home but otherwise was doing well for a preemie. She ate great. She had a sweet, happy, easygoing disposition. She never cried or fussed. Quite frankly, she was perfect, Katie told us. She was thriving. The new parents bunkered down at home as they adjusted to their new normal.
Then, on January 24 — a Sunday afternoon about a month after Callie was born — Katie noticed her daughter had developed a slight cough. At first, she wasn’t concerned.
“It wasn't a cough like gasping for air, or like something was wrong. It was more like when a toddler mimics their parent, like mimicking their parent’s cough,” she said. “But being a first-time mom, obviously that next day I called the doctor. They brought us in, checked her over, and said Callie was fine.”
She wasn’t fine, though. The next day, Callie stopped eating. She became pale and lethargic. She was sleeping through the night, unusual and concerning for such a young infant. On Wednesday, Katie returned to the doctor, and it was there that Callie stopped breathing entirely.
“They took her out of my arms and beat on her back to bring her back, then took us to the hospital via ambulance,” Katie shared. “That was the first time I ever heard Callie cry.”
Doctors admitted Callie to the pediatric intensive care unit (PICU) and began treating her for possible sleep apnea. She was intubated, and on Friday she underwent a series of tests and exams. When Katie questioned possibly bringing her daughter to another hospital three hours south — “one of the best in the country” — she was told Callie’s case wasn’t that critical and that she’d be fine where she was. but Callie’s case worsened, and by 1:17 a.m. on Sunday morning, she was gone.
The new parents were heartbroken and devastated … and confused. “As a parent who watched her child on a breathing machine, we were like, ‘How the hell did this happen? It was breathing for her.’”
One of the tests that Callie had undergone that previous Friday afternoon was for pertussis, more commonly referred to as whooping cough. Because it takes time for that particular test to culture, it wasn’t until after Callie’s death that the test came back as positive. Katie and her husband had to stay goodbye to their 37-day-old daughter on her original due date.
“We were getting congratulations cards and ‘I’m sorry’ cards at the same time.”
In the aftermath of Callie’s passing, Katie told us the Centers for Disease Control (CDC) got involved to figure out how the infant contracted the disease that took her life. In the end, it was revealed that she got it from a nurse who was working in the NICU during her 12-day stay. The nurse was found not to be up to date on her Tdap (tetanus, diphtheria, and pertussis) booster shot.
“She was carrying the virus but didn’t know it, because it can sit in your system for up to three weeks before you have any symptoms,” Katie said.
The CDC recommends that adults who have already been vaccinated against tetanus, diphtheria, and pertussis get a Tdap booster shot every 10 years. It also recommends that every pregnant person get a Tdap booster at 26 to 34 weeks. This latter recommendation, however, was not in place when Katie became pregnant with Callie in 2009.
“So I didn't have that booster,” Katie explained. “Callie didn't have those immunities when she was in my belly. And when you're a baby, you don't get your first Tdap shot until you’re two months old. So my child was unvaccinated [against whooping cough], because she was too young.”
The CDC also recommends that health care providers — such as nurses, doctors and other medical staff — be immunized against tetanus, diphtheria, and pertussis and receive a booster shot every 10 years, and many people assume that health care workers are required to be vaccinated in order to work in the field. Unfortunately, a rise in optional immunization policies means medical providers could be putting their patients at additional risk without patient knowledge.
“This didn't have to happen. It's preventable,” Katie shared. “People have to realize that they can kill somebody’s child unknowingly when you’re not up to date on your vaccines. You're not getting the shots for yourself, you know? You're doing it for those around you.”
Ten weeks after Callie died, Katie and her husband learned they were pregnant again … and that their daughter Chesney was due to be born on Callie’s first birthday.
“That was the part where I felt like my life turned,” Katie told us. “With each of our pregnancies [after Callie], everybody around us had to have a Tdap booster. I put notes on my hospital door. They couldn’t come in without a Tdap booster. Three of my four kids were born in the winter, and put a note on my front door: ‘If you're the delivery person or a mailman, don't come near my door if you're not vaccinated.’ With the first two pregnancies, my FedEx man would leave the package on my step near the sign … with my third child, he came in and showed me his doctor's note that he went and got a Tdap, because he listened and he didn't want to put my child at risk, which I thought was fantastic.”
Photos (L-R): Katie, Craig and Callie, Callie, Quinton Gibson, Lead guitar player for Darius Rucker, PJ Fleck, University of Minnesota head football coach, Dr. Jerome Adams, former US Surgeon General
In the years since Callie’s death, Katie has become a strong voice and advocate for not just the Tdap vaccine specifically, but immunization in general, because, “If this can happen to me in rural Indiana, this can happen to anybody anywhere.” She has appeared on Good Morning America and ABC News in addition to a long list of local media outlets to share Callie’s story.
“I don't do this for me. I do it for my daughter, who's not here to defend herself,” she said. “I want to keep her spirit going. It's been 16 years, but she deserves to have a voice still. She was a real person, and healthy, and gone within 37 days. And so I do it for her. You don't realize how scary it can be until you walk that road … and I don't want anybody else to walk that road. I want to protect your kid. If you're not vaccinated, you could put somebody else's life in danger.”
If you have a story about how an illness, disease, or any other health-related issue has impacted your life, we want to hear from you. Share your story with us here. It could help others — and create a healthier North Dakota for all of us.