Torry will steal your heart with his smile: How Riley's palliative care team supports those with cerebral palsy

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11/27/2022

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Thirteen-year-old Torry has cerebral palsy and sees many specialists at Riley. But the palliative care team is there to fight for him and his quality of life.

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Torry Latello can win you over with his smile. The 13-year-old son of Chris and Sarah Latello is nonverbal, but that smile says a lot.

“He is very gifted at stealing hearts,” says his mom, Sarah.

Torry, who has cerebral palsy and uses a wheelchair, came into the couple’s life at age 2½, and they officially adopted him at age 3 to join three older siblings at home.

That’s when Riley Children’s Health became a big part of their lives.

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is caused by abnormal brain development or damage to the developing brain before, during or after birth.

For Torry, it means seeing a team of specialists at Riley frequently to manage all of the medical issues associated with CP. Within the past year, an additional team of specialists has come forward to support Torry and his family – Riley’s palliative care team.

November is National Hospice and Palliative Care Month.

“That’s the most incredible team in the hospital,” Sarah said. “I cannot say enough good things about these people.”

Like most people, Sarah at first was confused when the family was referred to palliative care.

“I always thought palliative meant near death. I had no idea that it actually means fighting for life and for quality of life.”

Dr. Laurie Jacobs, clinical director and attending physician for Riley’s palliative and hospice care team, explained that end-of-life care – or hospice – is a relatively small part of what they do, though it looms large in people’s perceptions.

To be referred for palliative care, a patient must be suffering a serious illness, though not necessarily a terminal illness. Supportive care can be offered alongside potentially curative treatments, Dr. Jacobs said.

“We are focused on supporting the patient and family, as well as symptom management and medical decision-making.”

Hospice care, on the other hand, is available to a patient with a life expectancy of six months or less.

Dr. Jacobs joined Riley about a year and a half ago after completing her fellowship at the University of Alabama at Birmingham. Before that, the University of North Carolina School of Medicine graduate completed training in pediatrics in Pittsburgh and worked as a NICU hospitalist for several years.

All of her experiences eventually led her to the palliative/hospice medical specialty.

“People think it’s really strange sometimes that I think I have the best job in the world, and that’s because they don’t always understand what it is that I do,” she said.

“There are lots of kids who are seriously ill, and we can’t always do something about their illness, but I can help change the way they and their families experience their illness and support them through that process, whatever the outcome will be.”

That support has meant the world to the Latello family, especially in the past few months when Torry was admitted to Riley multiple times.

“Since spring, things have been really difficult with Torry,” Sarah said. “I remember them (the palliative care team) telling me they were available 24/7, and I thought that was crazy.”

But when she had to take her son to the emergency department a few weeks ago, Dr. Jacobs met them in the ED with snacks and a phone charger, figuring both would come in handy.

Dr. Jacobs waited with the family for the emergency physician on duty because Torry’s condition is complex and she wanted to explain his situation, Sarah recalled.

“The relief of having someone do that for me was huge. They are more than doctors – they are friends,” she said.

What she appreciates most is how the team works with other teams in the hospital, looks at the big picture and fights for what’s best for Torry.

“They really fight to know our family and our wishes for him. They know how to fight best for us.”

While the palliative care team doesn’t have a clinic per se, they “drop in” to appointments that patients have with other specialty physicians to ensure that those medical teams focus on what’s most important for each family.

“We get to know our families, sometimes for a long time, and sometimes our time with them is shorter and more intense,” Dr. Jacobs said. “It is an honor to be a witness to their journey and to make sure we’re supporting our kids and our families as well as we possibly can.”

Besides Dr. Jacobs, Riley’s palliative/hospice care team has grown and evolved over the past year to include: Dr. Jessica Zavadil, attending physician; Amy Haskamp and Kortni Haupt, advanced practice providers; Elisa Harris, nurse navigator; Kelli Cloud, practice administrator; Alisha Fuino and Ellen Mail, clinical social workers; Shannon Lytle, senior administrative assistant; and Dr. Jason Niehaus, interim division chief.

“We make sure that every day we have with them and their families, that given the constraints of their illness, they are having the best quality of life they possibly can,” Dr. Jacobs said.

Navigating her child’s serious illness is hard enough, Sarah said. So having a specialized team come together to support Torry and the family means the world to her.

“I want to tell everybody about them,” she said. “All these years I had no idea. They came at the time I really needed them.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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