Supporting Latino families: The power of relationships

Spanish-speaking staff and parents support Latino families at Boston Children's Hospital.
Cecilia Matos and Sara Diaz support Spanish-speaking families at Boston Children’s Hospital.

Navigating a child’s medical journey can be difficult on any parent. But for a mother or father not familiar with the U.S. healthcare system or whose first language isn’t English, the journey is much more complex.

Just ask one of the attendees at Fuente de Luz (“Fountain of Light”), the monthly informational group for Spanish-speaking families at Boston Children’s Hospital. On the first Tuesday of every month, around eight to ten Latino mothers — and occasionally fathers — get together to share their experiences and receive support from each other. There are hands to pass tissues and hold onto others; una familia formed from shared experiences.

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Cadagan: Humor and tenacity after a stroke

Treatment for stroke has helped Cadagan thrive.

Most parents try to discourage their children from indulging in humor about bodily functions like burping. But for Daniel and Lori Hooley, a simple smirk in response to a belch was the sign they needed that their daughter, Cadagan, was going to be okay.

It was 2012 and 7-year-old Cadagan was asleep, tucked into bed for the night. Around 11 p.m., she suddenly awoke — but it wasn’t because of a nightmare or a late-night request for a glass of water. Instead, she seemed limp and couldn’t focus. Then she began throwing up. Born with an extremely rare genetic disorder called trisomy 12p, the little girl had already experienced her share of health challenges. But this was something different.

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Code talker: A Q&A with genetic counselor Kira Dies

Kira Dies, a genetic counselor, won the Code Talker Award.

Your child has just been diagnosed with a rare genetic disorder. Your pediatrician has never heard of the condition and the internet doesn’t offer much information. Where do you turn?

Kira Dies, a genetic counselor in the Department of Neurology at Boston Children’s Hospital, helps parents with these hard questions every day. One of about only 4,000 genetic counselors in the country, Dies has been trained in handling both the scientific and emotional sides of genetic disorders.

Dies was also the recent winner of the Code Talker Award, presented by Genome Magazine and the National Society of Genetic Counselors (NSGC). Two other genetics counselors from Boston Children’s were also nominated, Casie Genetti and Beth Sheidley.

Although Kira works in neurology, primarily with patients who are diagnosed with tuberous sclerosis complex (TSC), the nomination that won her the Code Talker award was from Kasey Edwards, mom of Robbie, who was diagnosed with a rare type of hereditary spastic paraplegia, SPG 47. At the time Robbie was diagnosed, only one other child in the United States was known to have the same diagnosis.

We sat down with Kira to learn more about her role at Boston Children’s.

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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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