The baby – a girl – was healthy. Was. Then, two months after birth, she got a respiratory virus. A bad, baffling one that, despite intensive care over the next eight months, destroyed her lungs through a merciless mechanism called interstitial lung disease (ILD). Her parents made the heart-wrenching decision not to seek a lung transplant, and the girl died.
For pediatric pulmonologist Robin Deterding, that death a decade ago—a death she couldn’t explain—was a turning point: an end that was also a beginning.
“I got tired of saying, ‘I don’t know,’” she explains, “so I decided to change the paradigm.”
She devoted herself to understanding more about ILD, and she also created two organizations – the nonprofit chILD Foundation and the chILD Research Network – to accelerate research breakthroughs.
As chief of pulmonary medicine and director of Children’s Hospital Colorado’s Breathing Institute, Deterding says she wants to change things not only for kids in Colorado, but also for children around the world.
“If you treat kids with rare, complex diseases, the present isn’t good enough,” she says. “You aim for the future—making a difference not just 100 years from now, but in the lifetime of a child. To do that, you have to think outside the box.”
Jumping into the unknown
Some people might be put off by the prospect of jumping out of the box and into the unknown. Deterding isn’t one of those; in fact, she’s spurred on by the prospect.
“I like to be a trailblazer, and I’ve always been driven by curiosity and an appreciation for the complexity of science. I like to live in a ‘yes’ state, not a ‘no’ state.”
As she rattles off the advances and convergences she sees from exploring new avenues – DNA sequencing and stem-cell technology, to name a few – Deterding’s enthusiasm blazes even brighter.
She explains how her research colleagues can now lift a skin cell from a child, take it back to a “stem cell”— meaning to de-specialize it, transforming it into a cell that could become nerve or muscle or lung tissue —and then create the cell with the specific mutation that causes a disease.
“Then we can do testing to find drugs that can prevent or correct that mutation,” says Deterding. “They’ve already done it with cystic fibrosis. Now, working with scientists around the country, we’ve got grants to do it for ILD. High-throughput drug testing is the way of the future for our kids with genetic mutations.”
Deterding’s vision of the future and her current research also include discovering specific protein markers of diseases to pinpoint what’s going wrong in a child’s body and how to make it right again.
“We have a unique new collaboration with a Colorado biotech company that lets us measure thousands of proteins in a single drop of blood,” she says. “This technology should allow us to determine a kid’s disease diagnosis, prognosis and response to treatment. That’s personalized medicine, and that’s the future, too.”
She makes these predictions—these promises—from the place where she chooses to take her stand, as a clinician and a researcher: From a place of hope, in the state of “yes.”