Stories about: National Heart Awareness Month

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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Connected by little hearts

Jeffrey as an infant

When Jeffrey Cameron was born in 1996, he seemed to be a perfectly healthy baby. Then, at just ten days old, baby Jeffrey went into acute respiratory distress and was taken by air ambulance to a local children’s hospital where he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart was underdeveloped and couldn’t pump blood properly.

After a dizzying round of meetings with doctors, Jeffrey’s parents, Lenore and Tim, were presented with a set of difficult choices: Jeffrey could have a heart transplant, undergo a series of three open heart surgeries, or they could let him die at home.

“The doctors outlined our choices for us, and their exact words were, ‘You have three options and they’re all not very good,’” Lenore says. “We were told that transplant hearts for infants were extremely hard to come by and the that the 3-staged surgery was experimental. They said even if Jeffrey lived he might not have any real quality of life after all the surgeries.”

Based on the information presented to them by doctors, Lenore and her husband were under the impression that there was little hope for Jeffrey. After agonizing over the decision, the Cameron’s brought Jeffrey home with them so the family could enjoy what little time they had together in the comfort of their own house. It was a devastating time for them, but as the days wore on and Jeffrey continued to fight, friends and family asked the grieving couple to consider getting a second opinion. They began researching other treatment centers and learned that Children’s Hospital Boston had been successfully treating HLHS since the early 1980s, and patients with the condition were routinely sent there from all over the world.

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Valentine’s Day wishes: raising awareness of congenital heart defects

Happy Valentine’s Day. Appropriately enough, this heart-centric holiday falls right in the middle of National Heart Awareness Month, and we couldn’t think of a better way to celebrate than giving our readers a brief update about Parker Bolton, a Children’s Hospital Boston patient born with a congenital heart defect (CHD), called hypoplastic left heart syndrome (HLHS), and the face of Thrive’s Our Patients’ Stories section. (That’s Parker, smiling broadly over there on the left-hand side of this page.)

Since first visiting Children’s, Parker has grown significantly.

Parker first came to Children’s for open-heart surgery two and half years ago. At the time his health was questionable and his mother Casey knew very little about HLHS; it’s amazing how much can change in two and a half years.

Since his first surgery performed by Sitaram Emani, MD, of Children’s Cardiovascular Program, Parker has been growing consistently and his mom Casey has gone from knowing nothing about HLHS to becoming a heart advocate in her home state of New Hampshire. In fact, thanks to a letter writing campaign headed by Casey, New Hampshire governor John Lynch proclaimed February 14, Congenital Heat Defect Awareness day in his state, two years in a row.

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