How Instagram gave hope to a mother — and her daughter’s doctor

I am not a fan of Instagram. As a physician who grew up and trained for a medical career in the era before social media, I’ve been skeptical that this form of communication can truly inform or accurately convey medical information or facts. But an encounter with Isabella and her mother opened my eyes to the hidden power of this social media platform.

It was hard to miss Isabella in the hallway of Robert Reid Cabral Hospital in Santo Domingo, the capital of the Dominican Republic. The narrow corridor was filled with children running and playing between the plastic chairs lining each wall where their parents sat and waited, sometimes for hours, hoping to have their children evaluated by our medical team in the hopes of finding a diagnosis and a treatment plan for the breathing, speaking, or swallowing problems that the local health care teams were having trouble understanding and solving.

Most of the children were wearing the brightly colored T-shirts we had brought with us from Boston to give as gifts on the first day of our weeklong medical mission. Not Isabella. The 4-year-old sat quietly in her wheelchair, carefully positioned out of the chaos, wearing a white dress with a yellow bow adorning her brown hair. Although she did not interact with any of the children, but her head moved slightly to the left and right, giving the appearance she was following their movements. Her eyes did not focus together on a given object; instead, one eye would focus straight ahead while the other was shifted away, slightly to the right.

She did not speak to anyone, but gently cooed as she quietly breathed in and out through the white tracheostomy tube emerging from a hole in her neck.

Although Isabella’s eyes could not focus, her mother’s surely could. As I examined her daughter, Diana scrutinized everything I did, watching me through large, owl-like glasses that made her brown eyes seem even larger than they were. I saw that in addition to the tracheostomy, Isabella also had a gastric tube in her stomach to provide her with food. She could not walk, but sat limply in her wheelchair.

I asked Diana what had brought her and Isabella to the hospital that day.

As if waiting for this prompt, Diana pulled out her cellphone and opened Instagram. I sat beside her as she showed me a beautiful newborn baby girl with a full head of hair. With each flick of Diana’s finger, I saw the baby grow and become a fat-cheeked, 4- then 6-month old, her sparkling eyes focused and looking straight ahead, an infectious smile on her face. Fast forward to when Isabella was 8 months old.

One weekend she developed a high fever. A photo showed her lying limply in her grandmother’s arms in what I assumed was the waiting room of the local emergency department. Diana told me the story, but the pictures memorialized the horror.

There was Isabella in the intensive care unit, a breathing tube taped to her mouth, connecting her to the ventilator that was keeping her alive. Flick forward again and the photos told the story of Isabella after she had “recovered,” although her restored self was not the child she had been before. Diana’s photo of Isabella the day she returned home from the hospital revealed a child who no longer was aware that the world was looking at her; she stared blankly beyond the camera’s range, with neither eye focusing forward.

I had certainly seen what cellphone cameras can do, witnessing my two daughters carefully curate their day-to-day lives into perfectly filtered images. What I had not seen before was the power of pictures woven together that, when combined with a mother’s narrative, brought a child’s life into panoramic view. If a picture represents a thousand words, then what of a thousand pictures?

Diana’s Instagram put on display for all to see not an overindulgence in self — it revealed Isabella’s story as much as Diana’s — or the often-false presentation of life seen through rose-colored filters, but the painful truth, and sometimes despair, of real life. The images, a testament to a mother’s unbending love and overwhelming devotion, told a story more clearly than words ever could.

I looked up from the photos a little shaken, and began to worry that Diana would ask us for a surgical miracle, like removing the tracheostomy tube from Isabella’s neck or the gastric tube from her stomach. Pictures or no pictures, neither was going to be possible.

But Diana did not ask what we could do for her daughter on this mission. Nor did she ask the question I fear most: “Why did this happen?” She simply asked, “Will Isabella ever improve?”

At first I had no answer, and feared that any optimistic words would be patronizing, false, and unhelpful. I paused and thought. Then I asked to see Diana’s cellphone, and asked her to show me how to get back to her Instagram page and the stream of chronologically arranged photos. I started with the one of Isabella the day she was brought home from the hospital. Then we watched together as I flicked my fingers forward, week by week, month by month, and year by year.

When the images slowed so they were no longer a blur, there was a photo of Isabella taken just a week ago, still with her tracheostomy and gastric tubes, but now lying on her stomach, hands pushing the floor, ever so slightly lifting herself upwards. Her left eye was looking at the camera and revealed a faint glimmer. The photos themselves, when viewed not in isolation but rather in this neatly arranged timeline, offered a subtle, yet unmistakable, case for hope.

“Who knows?” I said.

“Thank you,” she replied.

For the very first time, I was grateful for Instagram.

Christopher Hartnick, M.D., is a professor of otolaryngology at Harvard Medical School and director of pediatric otolaryngology at the Massachusetts Eye and Ear Infirmary.