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Feeling better, even without all the answers

A medical mystery can’t keep this active girl down. Thanks to her doctors, she’s back in the game.

Young girl with brown hair jumps high on a trampoline in her backyard.
Jumping for joy, Deana’s happy to be sporty and active again.

When Deana D’Urso, a healthy 9-year-old competitive soccer and lacrosse player, complained of chest pains during practice, her mother, Karen, didn’t pay it much mind—figuring her daughter was tired.

“But then, at her first game, she said she was in excruciating pain and wanted to stop playing,” said Karen, who lives in New Hyde Park. That was definitely not in character for Deana.

Karen took her daughter to the pediatrician, then to a cardiologist. But neither doctor had an answer other than growing pains. Imagine Karen’s surprise when, just a few weeks later, Deana collapsed during soccer practice.

“She passed out on the field,” recalled Karen. “The ambulance came—I actually thought she was having some kind of heart attack—and we told them to take us straight to Cohen Children’s Medical Center.

There, Deana was admitted after doctors discovered dangerously low hemoglobin (iron) levels. Over the next five days, the little girl underwent a series of tests to try to pinpoint the cause, and received blood transfusions. Worried Deana might feel sad cooped up in a hospital room, Karen was surprised to find her daughter was actually having fun. Between the child life specialists, the nurses and doctors, Deana not only received excellent medical care, but was made to feel at home.

“This was all really scary for Deana at first,” said Karen. “There was a lot of poking and prodding. But everyone got down on Deana’s level and helped her through it. Overall, it was a very positive experience for both of us. We were happy with Deana’s care, but we were also happy that I could sleep in her room with her and that we didn’t have to worry about meals.”

Young girl with brown hair leaning on a white dresser in her bedroom.
Child life specialists helped make Deana’s hospital stay comfortable. Even fun!

Unfortunately, every test that the doctors administered to try to understand the drop in Deana’s hemoglobin levels came back negative. “The only sign of an explanation was a minimal amount of blood found in her stool,” said Karen. “But that was it.”

As such, the doctors were unable to come up with a specific diagnosis for Deana’s condition. But Karen said both she and Deana felt very comfortable with the doctors, including Toni Webster, DO, a pediatric gastroenterologist, and Lawrence Wolfe, MD, a pediatric hematologist/oncologist, and also with Chris, a beloved nurse practitioner who was with Deana all the way. Everyone took the time to listen. Even in the absence of a concrete definition of the problem, Karen said that kind of time and attention really helped.

“I definitely feel like Dr. Webster really cares about her patients and what she’s doing. She really takes the time and listens to everything I have to say, to every question I have,” said Karen. “Even to this day, even if she’s off hours and I call her, she’ll immediately call us back. She always makes me feel more comfortable, helping me feel like I’m making the right decisions for Deana.”

Once Deana came home, her condition required her to visit Cohen Children’s and Dr. Webster every two weeks to check her levels and receive intravenous (IV) infusions to build her iron stores. At first, Deana was very scared of the needles. But the child life specialists gave her a doll to help her understand the procedure—and even allowed her to administer IVs to the doll itself.

“She really clung to that doll—it helped her feel so much better every time she was getting her own needle,” said Karen. “It really helped her to get over her fear psychologically.”

Right after Deana was first released from Cohen Children’s, she had an emotional return to the soccer field, with all the teams in the league welcoming her back with her jersey number painted on their faces.

“These girls were all there when the ambulance came, and they were worried about her,” said Karen. “We brought her to a tournament right after she came home. She couldn’t play yet, but everyone wanted to know she was OK. It was a real bonding moment for all of them—and just so cute.”

Young girl with brown hair holding a parrot and smiling face to face with it.
Deana gets some love from her family’s parrot, Pixie.

Today, Deana still doesn’t have a diagnosis. But she is back on the soccer team, going on ski trips with her family, excelling in school and playing with the family’s parrot, Pixie. Karen thanks Dr. Webster and the team at Cohen Children’s for getting her back to this point.

“She’s not 100% yet, but she’s doing the best with what she has,” said Karen. “I am grateful that we have doctors who are so attentive and take the time to listen to everything. It really makes all the difference.”