Stories about: Family Advisory Council

Care for short bowel syndrome helps Ellie enjoy being a kid

treatment for short bowel syndrome at Boston Children's
Ellie and her dad, Gib

It’s a Thursday afternoon and Ellie Brogan is bubbling over with energy, greeting old friends and waving at others as they walk by. The 11-year-old, says her father, Gib, is “raring to go.” She’s a Girl Scout, plays viola and is in the cast of her school play, but today’s appointment is no typical afterschool activity. Instead, Ellie and her dad are paying their monthly visit to the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital.

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After the NICU: How to become an outpatient visit guru

  • Twins side-by-side in the NICU
    Drew and Emma, 2008

The Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital is unlike any other place. In the NICU, a team of top-notch providers cares for your child around-the-clock. Once home, you must quickly adapt to caring for your fragile baby on your own, which includes navigating the world of outpatient visits.

Our twins, Drew and Emma, were born nine weeks early. After a long stay at Boston Children’s NICU, my husband Jon and I began juggling multiple outpatient visits with Emma. Here are some tips and tricks we learned along the way.

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Trusting your instincts: One mom’s story

Serena with Julia and Sebastian

Serena Hadsell has no medical training. But when her 4-year-old daughter Julia got sick a few days after Christmas in 2013, something else kicked in – her mother’s intuition.

“Julia had a stomach bug and was having trouble keeping anything down,” recalls Serena. “It was very late and I was trying to go to sleep, but I got the sense that something was wrong: Her breathing wasn’t quite right.”

A frightening late-night hospital trip

Serena considered waiting out the night at home and calling their pediatrician in the morning, but she couldn’t stop watching Julia. So, despite the late hour, Serena decided to pack up the family, including 6-month-old Sebastian, and head to their local hospital. Once there, it turned out that Serena’s instincts had been right.

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Beyond balloons: 6 ways to help a family in the hospital during the holidays

Sophie and Maddie Litterer pose with Santa
Sophie and Maddie pose with Santa

There’s nothing like being home for the holidays. But for families with a child in the hospital, sometimes that’s just not possible.

As a friend or family member, you may wonder what you can do to make the family’s holidays a little brighter. Some of the best advice comes from parents who have been there and know firsthand what can make a difference.

Reach out

“Don’t be afraid to let the family know you’re thinking of them,” says Boston Children’s Hospital Family Advisory Council member Katie Litterer, who’s spent more than one holiday in the hospital with her twin daughters Sophie and Maddie, now age 8, after they were born prematurely at 27 weeks.

“I always appreciated the reach out, no matter what was happening,” she says. “At this time of year especially, you just want to know that other people care.”

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