Stories about: congential heart defect

For this heart patient, what goes around, comes around

Robin

When Robin Scott was a little girl, traveling back and forth to the hospital to be treated for her single ventricle heart defect, her mother, Susan, had a simple wish: “What I really wanted was to see an older child who had a heart defect … I wanted to see teenagers, adults … I wanted to see people who had a normal life.”

Funny how things work out. Today, Susan’s daughter is 30 years old and working at Boston Children’s Hospital—the same place she’s been receiving treatment since she was born. Robin, who recently transitioned to an analyst role in the Physicians’ Organization, previously worked in the Advanced Fetal Care Center (AFCC).  There, she was frequently asked to meet with fetal cardiac patients and their expectant parents, answering questions about her own experience and serving as a strong, healthy example of a congenital heart patient living a normal life.

Robin had volunteered at Boston Children’s as a teenager and had “always wanted to work at the hospital.” When a job opportunity came along in 2010, she took it. Strangely, Robin says that the job recruiters who helped place her at Boston Children’s did not know that she had been treated there, and her personal history had nothing to do with their hiring decision.

Today Robin is often in contact with doctors and nurses who care for heart patients, and they regularly ask for Robin’s help in answering questions from parents.

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Giving children a heart valve that can grow with them

Allie Duhe

When her twins were born, everything seemed to be going according to plan for Emily Duhe. “My husband and I wanted lots of kids, and we were so happy to start a big family,” she recalls.

Within a couple of months, though, it was clear that one of the twins, Allie, was in trouble. “We brought her to the hospital thinking she had pneumonia,” Emily says.

“That’s when they found multiple defects in her heart.”

Logan Narolis

It’s a familiar story. Margaret Narolis’ son Logan was also born with a major heart defect. “When Logan was born we were told he’d need to have multiple surgeries to reconstruct his heart,” she says.

The two families, separated by thousands of miles—the Duhes live in Louisiana, the Narolises in upstate New York—both came to Boston Children’s Hospital looking for better treatment options for their children’s damaged hearts.

Fortunately, they found what they were looking for.

Logan and Allie are now part of a small group whose hearts are beating with the help of a new expandable replacement valve—one that essentially can be made to grow as they do.

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Taking the world by storm: Keeping up with Ari Schultz

Ari Schultz

When Ari Schultz’s parents, Mike and Erica, learned that their soon-to-be born son had fetal critical aortic stenosis (blockage of a valve in the left ventricle of his heart) they were devastated but determined to help him the best they could. So they came to Boston Children’s Advanced Fetal Care Center (AFCC), which performed two fetal cardiac interventions on Ari in-utero, making him the only person in the world to have two successful cardiac interventions pre-birth. Ari was then brought into the world and continued treatment at Boston Children’s.

Since learning about Ari’s heart condition at 18 weeks gestation, Mike has been writing a blog, echoofhope.org, to keep family and friends up to date on his son’s condition. But Mike’s writing is different than what you find on most patient blogs; he approaches this serious and scary topic with humor. By writing funny, first-person accounts of life through Ari’s eyes, Mike gives his son a voice and personality unlike any other baby, and a much needed smile to people close to Ari and his family. We appreciated his style so much we asked him to write a piece just for Thriving.

David Frost landed Richard Nixon.

Barbara Walters landed Fidel Castro.

James Lipton landed Jimmy Stewart, Al Pacino, Marlon Brando, Jack Lemon, Christopher Walken, Clint Eastwood and more all at once.

But we’ve outdone them all! Yes, that’s right, Thriving has landed the most sought after celebrity interview in all of news media. (Take that, 60 Minutes.)

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People magazine profiles Children’s heart transplant patient

Have you seen this week’s copy of People magazine? It features the story of Avery Toole who was born with hypoplastic left heart syndrome (HLHS), one of the most rare and most devastating congenital heart defects. As a long-time nurse in Children’s Hospital Boston’s Neonatal Intensive Care Unit, her mother, Cheryl, knew Avery might one day need a heart transplant. What she didn’t know was the amazing relationship that she, her husband, Mike, and Avery would one day have with the family of the boy whose heart now beats in Avery’s chest.

Special thanks to KBTX for contributing to this story. To see more on the Toole/Lawyer connection, please visit their website as well.

To learn more about their incredible journey, watch the following video and grab the magazine on newsstands everywhere.

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