Stories about: Our Patients’ Stories

Inside the NICU: Shining light on the healing power of touch

Baby girl in NICU with mother
Abigail underwent open-heart surgery and received care in Boston Children’s Cardiac Intensive Care Unit

Traveling through Boston Children’s Neonatal Intensive Care Unit (NICU), you feel the warmth of natural light and a soothing sense of calm.

One mom, leaning delicately over her son’s bedside, caresses his forehead and gently whispers a lullaby. Only a few steps away, a father rests in a chair with his tiny son on his chest. Lifesaving technology fills the 24-bed NICU and a reassuring team of specialized physicians, nurses and Child Life Specialists monitor, treat and embrace their delicate patients.

Nearly 15 million babies, about 1 in 10, are born prematurely each year and in many cases, require complex medical and surgical care. Equally critical to preemie and newborn health is the healing power of touch, experts say.

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Danny’s journey to a biventricular heart

Danny, born with heterotaxy syndrome, peeks out from a tree.The first hint that something wasn’t quite right with Danny Sanchez-Garcia’s heart came at his mom’s six-month prenatal visit.

“There was a little blip on the ultrasound, but then it was gone on the next one, so they didn’t think it was anything and I didn’t worry any more about it,” says Danny’s mom, Cynthia.

Cynthia was overjoyed when Danny was born at her local hospital seeming perfectly healthy. But as the hospital staff monitored Danny overnight, they noticed his oxygen level was lower than normal and decided to run more tests. His doctors believed the tests pointed to a congenital heart defect called tetralogy of Fallot with pulmonary atresia.

“They transported him overnight to Boston Children’s Hospital,” says Cynthia. “I felt like I was on a roller coaster, especially as a first-time mom.”

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How precision medicine turned Jesus’ unique tumor into an operable one

Jesus stands on a playground jungle gym in August 2017, after a cancerous tumor was removed surgicallyOn a hot, August day in a Boston park, Jesus Apolinaris Cruz cooled off with a water squirt gun fight with his mother and sister. As he nimbly ran and dodged their aim, he twisted around to sneak shots of water back in their direction.  Peals of laughter rang out from the group as Jesus landed a jet of water on his sister.

It’s hard to imagine that just weeks earlier, Jesus, 13, had undergone surgery near his hip to remove an unclassified tumor, so-described because it couldn’t be categorized as any specific kind of cancer.

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Reena’s story: A bright future with short bowel syndrome

Reena doesn't let short bowel syndrome define her.

She’s just 16, but Reena Zuckerman knows exactly what she wants to be doing in another 10 years. “My dream is to play on the press team in the annual Women’s Congressional Softball Game,” says the aspiring political journalist. Since 2009, the event has pitted members of Congress against the press corps, raising nearly a million dollars for charity. “When I’m not doing schoolwork or watching TV, I’m listening to political podcasts and NPR,” Reena confesses.

It’s an impressive goal, but one that’s no doubt attainable for this driven teen, who’s been pushing herself to defy expectations since she was a baby. Her accomplishments are all the more remarkable considering that she was born with a serious gastrointestinal condition.

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