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A heartfelt reunion

  • Tripp Underwood
  • 6/9/2014 12:00:00 AM
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 Hypoplastic Left Heart Syndrome (HLHS)Childhood friends Eileen and Annie were like most young girls who grew up in the 1980s: They played with Cabbage Patch Kids and My Little Ponies, and when Cyndi Lauper came on the radio to remind listeners that “Girls Just Wanna Have Fun,” they both danced and sang along like the song was written especially for them. But these two had a lot more in common than a mutual love for big hair and toy horses.

For starters, both girls were born with a serious congenital heart condition—Annie with Hypoplastic Left Heart Syndrome HLHS Eileen with Double Inlet Left Single Ventricle (DIVLS)—that brought them to Boston Children’s Hospital’s Heart Center for treatment in 1986. While at the hospital, they shared a room, each waiting their turn to receive the Fontan Procedure, a specialized surgery that helps children who have only a single working pumping chamber in their heart.

But Annie and Eileen shared more than a room and treatment plan; they also shared a common heritage. Annie was born in Peru, but was adopted by American parents and moved to the United States as a toddler. Eileen was a native Peruvian and came to the United States exclusively for her treatment at Boston Children’s.

For the better part of a month, the roommates passed the time playing games and communicating as best they could. (Eileen only spoke Spanish, Annie only English.) Somehow between Eileen’s mother’s translating and their own made up language of exaggerated hand gestures and giggles, Annie and Eileen managed to entertain each other for hours.

But close as they were for that month, after the girls had received their treatments, they each went their separate ways. Annie and her family went back to their home in Quincy, a suburb just south of Boston, while Eileen and her family returned to South America.

And because they were both so young, Annie and Eileen had no way of keeping in touch after they left the hospital. Years turned to decades, and aside from the occasional memory, neither woman thought much of her old Boston Children’s roommate.

But all that changed in 2011.

Searching for a connection

 Hypoplastic Left Heart Syndrome (HLHS)After their surgeries, Eileen and Annie went on to have fairly typical childhoods in their respective countries. However, neither of them ever met another person who had HLHS or DIVLS, never mind the Fontan Procedure.

As they got older, both Eileen and Annie grew more curious about how other adult survivors of childhood heart conditions lived. Did they go on to develop additional health issues? Were there warning signs of possible complications from their surgery they should look out for?

Now in their 30s, each woman had many questions and longed for a connection with others who had experiences similar to their own. It eventually took them to the Internet, and with help from Eileen’s sister, Eileen and Annie found each other on Facebook.

“When Eileen’s sister first reached out to me, my jaw dropped, I couldn’t believe it,” says Annie who now receives care from Michael Landzberg, MD at Boston Children’s Boston Adult Congenital Heart (BACH) Program. “Somehow I had gotten it in my head that Eileen had died from her condition, so it never occurred to me that I should look her up. Then, all of a sudden, I get a message saying that she’s alive and wants to talk about living with a congenital heart condition, which was what I was looking for too. It was amazing.”

For years, the two women kept in touch via the Internet, getting reacquainted and sharing their HLHS and DIVLS experiences and questions with each other. Then, when Annie posted a status update about an upcoming vacation to the Maryland area, where Eileen had lived since 2007, they made plans to meet for dinner.

It would be the first time in almost three decades they would meet face to face.

“It was so exciting, I couldn’t wait,” Annie remembers. “We got together at a local Peruvian restaurant and talked about everything. Even though we hadn’t seen each other in 27 years, we picked up right where we left off. It was just like seeing an old friend.”

And while their last meeting was almost a lifetime in the making, neither woman intends to go another 30 years before their next get together. Later this month, Annie is planning another Maryland trip, with plans to meet up with her former Boston Children’s roommate.

“Having Annie come back into my life has been a blessing,” Eileen says. “Who could have imagined that after all that time we would get to see each other again, alive and well in the United States. It’s been a long journey for us both, and I never imagined our paths would cross again, but I’m so glad they have. It’s great to have Annie back in my life again.”

 Hypoplastic Left Heart Syndrome (HLHS)

“ Eileen and Annie’s story is inspiring, as it demonstrates the lasting bonds that are often formed by those who share in facing and overcoming the challenges associated with congenital heart disease,” says Landzberg, who continues to see Annie on a regular basis. “At BACH, we commit ourselves to caring for those, like Annie, born with a serious congenital heart defect transition and survive long into adulthood, whether they were originally treated here at Boston Children’s, or, were treated elsewhere and then came to us due to our emphasis on providing lifelong care, with a full range of innovative inpatient and outpatient services.”

To address the needs of adults living with congenital heart problems, like Eileen and Annie, the BACH Program at Boston Children’s Hospital offers a full range of services from monitoring, diagnosis, cardiac catheterization, and surgical repair. It is one of only a handful of programs in the world that specializes in the care of adults with congenital heart conditions. To learn more about this innovative and truly unique program please visit their website. For more heart-centered stories like Annie and Eileen’s, follow Boston Children’s Heart Center on Facebook.

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