Stories about: Our Patients’ Stories

Solving the mystery of a shapeshifting neck tumor

Jaedin, who had a cervical teratoma, is now 10 years old. He is pictured with a remote-controlled race car this past Christmas.
Jaedin, 10 years old, holds the control for a remote-controlled race car, Christmas 2017.

Amanda Brown couldn’t shake an uneasy intuition that something just seemed “off” throughout her second pregnancy. During a scheduled caesarian section at her local hospital in North Carolina, her instinct proved to be true.

“I had given birth to my first son by C-section so I knew what to expect,” Amanda says. “But this time around, as the surgeons totally stalled in the middle of the delivery, I thought to myself, ‘it doesn’t take this long to pull a baby out.’”

When her son Jaedin was finally delivered, Amanda and her husband were shocked by their first sight of him.

“Jaedin had a huge mass on the left side of his neck that looked like it was growing out of his ear,” Amanda says. “The doctors told us they didn’t know what the mass was and that they would have to take him to a nearby children’s hospital right away.”

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Enjoying life to her full potential with cerebral palsy

Stella is thriving with cerebral palsy

For a month, Nikki Puzzo walked around with a hockey puck strapped to her torso. But this mother of two wasn’t just being silly or exhibiting her love of sports. Instead, she was demonstrating solidarity with her younger daughter, Stella. The little girl, who has spastic diplegia cerebral palsy (CP), had a device called a baclofen pump implanted into her abdomen. “I wanted her to feel more comfortable and know that she wasn’t alone,” explains Nikki.

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Surgery to remove blood clot saves London’s kidneys

London, who had a large blood clot in her aorta, recovers after surgery.Todd and Lindsey Taylor had barely settled in at home in Syracuse, New York with their new baby, London, when their world turned upside down.

London, who had seemed perfectly healthy at birth, woke up nine days later vomiting and struggling to breathe. They rushed her to their local children’s hospital.

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New treatment for SMA offers hope for Arianna

Arianna, who has SMA, is improving after treatment.For the first few months of Arianna Condon’s life, everything was moving along fine. She was a happy baby, and seemed to be developing much like her older sister, Tessa.

“She was gaining weight, and seemed to be doing great,” says Arianna’s mom, Marina. “She did have problems with reflux, but it was nothing too unusual for a baby.”

But by the time Arianna was 3 months old, Marina started to have concerns. Arianna wasn’t lifting her head the way Tessa had at that age. Something didn’t seem right.

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