Stories about: our patients’ stories

The Importance of Patient Advocacy and Family Care

By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis. 

KerrySheeran_1Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.

But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.)

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Reliving TEDxLongwood

The Longwood medical area (the section of Boston that’s home to Boston Children’s Hospital and many other renowned medical centers) was recently the site of an exciting speaker series called “TEDxLongwood”—an independently organized event that brought people in the Longwood area together to share a TED-like experience.

Two of the day’s presenters had personal ties to Boston Children’s, each with a unique and moving story, which we wanted to share with Thriving readers.

Elaine

Elaine C. Meyer, PhD, RN, is a staff psychologist at Boston Children’s and director of the hospital’s Institute for Professionalism & Ethical Practice. In the following talk, Meyer recalls personal experiences—both from her times as a doctor and a patient—to remind listeners that sometimes being supportive and emotionally available to a patient and her family is the most important care a person can provide.

Jimmy

Jimmy Zankel is a director of The Big Apple Circus, the circus troupe that trains the men and women who staff Boston Children’s Clown Care Unit. In the following talk, Zankel explains how specialized training, carefully coordinated communication with the medical team and a pair of oversized underwear played a crucial role in one child’s treatment.

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Catching up with Dominic Gundrum

Dominic 2When Dominic Gundrum first came to Boston Children’s Hospital late in 2012, his future was very much unknown.

He was born with a large, triangle-shaped gap running from his upper lip through the middle of his nose and forehead, known to the medical community as a Tessier midline facial cleft. His cleft was so large that fluid and tissue from his brain, normally encased in the skull, had seeped outwards, forming a golf ball-sized bubble underneath the skin of his forehead. It’s a condition called an encephalocele, and Dominic’s was so severe doctors weren’t sure how much they would be able to help him.

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Life with HLHS: Keeping up with Lucas

Baird-boys-3By Rebekah McGowan

When we first learned that our son would be born with Hypoplastic Left Heart Syndrome, we were devastated. But once the shock had worn off we were desperate to talk to other families who had been through the experience. We asked our doctor about support groups, but he was less than impressed with what was available.

“They’re out there, but it’s mostly propaganda,” he said, scrolling through a Google search of HLHS communities. “Regardless of what you may read, these kids can’t run and they can’t do sports.”

And while he wasn’t impressed with what Google had to say about the future of kids with HLHS, he was impressed with what Boston Children’s Hospital’s Heart Center could do for children with the condition—and I’m so glad he was. Through his referral we went to Boston, and there we found the hope we needed. It was there that we learned that our son had a good chance of having an extraordinary quality of life under their care. We were also told that other than contact sports, our son could do anything he wanted to.

Over the years Lucas continued to thrive. And for each year he got stronger we participated in the NSTAR walk for Boston Children’s Hospital. It’s our way to say thank you to the hospital that saved him, and to help fund additional research, particularly in the areas of congenital heart defects that affect 1 in 100 babies born every year.

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