Investing in Esmé: More than aerodigestive care

Esme sits with her parents in the Aerodigestive Center
PHOTOS: SOPHIE FABBRI/BOSTON CHILDREN’S HOSPITAL

Esmé Savoie is pretty sure she’s going to marry Walter someday. There are some barriers: Esmé lives in upstate New York; Walter now resides in Los Angeles. Esmé is 7 years old and Walter is several years older. And while Esmé is a human little girl, Walter is a Muppet. Differences aside, however, it’s no surprise that they’re soul mates. Both are silly, determined — and finding their own unique place in the world.

Born with four rare genetic mutations, Esmé has experienced clusters of drug-resistant seizures, developmental delays and other medical concerns for most of her young life. Early on, the mysteries surrounding her health led her mother, Hillary, to become somewhat of a citizen scientist as she strove to learn more about her daughter’s complexities. But it was Esmé’s history of severe aspiration — the entry of food or liquid into her lungs when she tried to eat — that ultimately brought her to the Aerodigestive Center at Boston Children’s Hospital.

Esme, who has aerodigestive problems wearing a pink shirt in the waiting room.

Mixed emotions

At just 3-and-a-half months old, Esmé aspirated so severely — vomiting up to 100 times a day — that she went into cardiac and respiratory arrest. “She turned blue,” remembers Hillary. “I walked into our local emergency room with her in my arms. It was completely terrifying.”

The emergency staff saved Esmé’s life, but Hillary and her husband, André, knew that she needed longer-term care greater than what they were receiving locally. Based on their research, they chose to come to the Aerodigestive Clinic for that aspect of her treatment, a decision fraught with mixed emotions. “We were really excited that there could finally be a place for us, but also skeptical and sad,” says Hillary. “We had felt that we had already bumped up against the limits of pediatric medicine.”

Esme waits with her parents in the Aerodigestive Center waiting room.

Benefits of a blended diet

Yet upon meeting the center’s director, Dr. Rachel Rosen, skepticism turned to relief. “We immediately felt that she was the person who could help our child,” says Hillary. “She was paying attention in a way that other doctors hadn’t.” Case in point: Esmé’s diet. Through her own research, Hillary had discovered that feeding Esmé a blended diet — made from table food pureed in a blender and fed to her through her feeding tube —seemed to have beneficial effects on her aspiration, vomiting and strength. But she feared that Esmé’s care team wouldn’t agree with this decision.

“We were worried that we would be told it was a bad idea and that we should go back to formula,” she says. Instead, Rosen — who is considered a leading expert in blended diets — supported this approach and encouraged them to experiment further with the help of the Center’s nutritionist. “More than that, she was the first doctor who treated us like we were experts in our daughter’s health,” says Hillary. “She helped us feel like Esmé’s parents, rather than medical assistants carrying out doctors’ orders.”

Esme visits with Dr. Rosen in the Aerodigestive Center.
Esme visits with Dr. Rosen

Ongoing support

That support has continued as Esmé has grown, and includes the rest of the Aerodigestive Center’s staff. “Dr. Rosen is our go-to person when we have a question or concern about Esmé’s health,” explains Hillary. “She’s figuring out medical mysteries and doing what’s best for our daughter, and her team is there to help make those phone calls and appointments happen for us.”

When she’s not obsessing over the latest Muppets movie, paying a visit to the Sesame Street set or showing off her wheelchair’s snazzy spoke covers, she’s reading — a skill she taught herself a few years ago. It’s a testament to her hard work and determination, as well as that of her parents and her care team.

However, like that of many medically complex kids, Esmé’s path isn’t easy, marked by ups, downs and sometimes plateaus during which her progress seems to stall. She still isn’t gaining weight, for example, and struggles with a variety of other health challenges. But Hillary knows she has an important ally in Rosen. “Even when Esmé is on a new therapy, ordered by another doctor for something outside her specialty, Dr. Rosen is at our side and is there for us,” she says. “She’s made a long-term investment in our daughter.”

Learn about the Aerodigestive Center.