Author: Ellen Greenlaw

Coming together from worlds apart for spina bifida care

Molly Gotbeter giggles impishly as she accepts a sugar cookie and frosting from a nurse. She’s sitting patiently on an exam table waiting to see one of her favorite people in the world — Benjamin Warf, MD, director of Neonatal and Congenital Anomaly Neurosurgery at Boston Children’s Hospital.

For this visit to the spina bifida clinic, Molly has traveled from her home in Charleston, South Carolina. But her journey to Dr. Warf and Boston Children’s has been much longer.

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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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Stronger together: Families of girls with SPG47 find support in each other

Imagine your child is diagnosed with a rare neurological condition. So rare that there are only a handful of reported cases, and those are from halfway around the world.

This was the case for Chris and Kasey Edwards of Massachusetts and Kevin and Angela Duffy of Pennsylvania. Their daughters’, Robbie and Molly, are among only 11 children in the world to be diagnosed with an extremely rare genetic disorder, called spastic parapalegia-47 (SPG47).

“When they told us how rare this was, our minds were going in a thousand directions,” says Kasey, Robbie’s mom. “We didn’t know what to think.”

The two families thought they were all alone, until they found each other. And on a recent warm fall afternoon, these two adorable girls and their parents met in person for the first time at Boston Children’s Hospital, where they both receive care.

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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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