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.

“When I speak to families, I always say each individual case is different,” Robin explains, “but I do get a lot of the same questions: They ask ‘What were some of the challenges you faced growing up?’ ‘Did you play sports?’ ‘Did you date people?’ They ask about my scar. They ask about my parents’ reactions.”

What does Robin tell them? “I tell them about my own experience,” she says. “I played sports—soccer and softball. I was a tomboy. The doctor never set any restrictions.” She also expresses the importance of understanding your own condition and getting the support you need to stay healthy. “I was lucky to have two parents who were very present and very aware.”

As an adult Robin (in the middle) offers help to families with children living with a heart condition

Being “present and aware” wasn’t always easy. Robin’s parents remember the difficulties they faced as she began her years of treatment. Susan remembers that right after Robin’s birth, “the doctor said ‘your daughter has a very serious heart defect and she will certainly die if we don’t perform surgery immediately.’” “It was the worst moment of my life, by far,” Susan remembers, “I was always worrying. Why did it happen?” Her father, Tom, says that when Robin was born, “We didn’t know anything. No one could tell us, they could never really assure us of anything.”

Quickly, Tom and Susan learned as much as they could about Robin’s specific heart condition (pulmonary atresia with intact ventricular septum), and they wondered what Robin’s life—and their own—would be like. Susan credits the staff at Boston Children’s for their support. “Dr. Freed was her cardiologist, and he let me ask anything, he was always available,” she says. In addition, “the nurses in the clinic were wonderful.”

Robin’s parents say that they did not interact too often with other heart patient parents, stating that they were striving to treat Robin like a normal kid and not a kid defined by her condition. “My attitude from the start was that I didn’t want her to feel that she was different, and I didn’t want to feel different,” Susan states.

Their approach seems to have worked. Robins asks, “Did I live a normal life? In terms of what normal is supposed to be, I feel that I did. Growing up, I knew that I was a little different, but I didn’t think I had a disability.”

Still, for Robin’s parents, being able to see and talk with a former heart patient—someone who had come through all the surgeries and treatments and was living a normal life—would have provided some comfort and hope over the years. “I would have loved to have had a Robin working in Cardiology – a 30-year-old woman who looks great,” says Susan.

Today, heart patient parents at Boston Children’s can meet that person in Robin Scott.

  • Dawn Benoit

    Congratulations to you and I am very happy to read your story. My son also has a heart condition ( HLHS)and just turned 18 in January. Boston Childrens performed his surgeries as well. I have pretty much treated my son normally and allowed him to play sports (basketball, baseball, golf) and found that was so important because I decided to dedicate mylife to my son and if I didn’t allow him to live as normal as possible what was the point. I am happy to hear that your parents felt the same. I felt that other parents who knew Alan’s condition thought I was crazy for letting him engage in those activities. Now I am reassured that I did in fact make the right decisions. Keep aiming for the sky . Take care. Dawn M Benoit

  • Andria

    Robin, I applaud you. I wonder if our lives crossed paths at Children’s many years ago. I was born with the same heart defect, treated at Children’s, my Cardiologist was Dr. Keane. I will be returning to Children’s, as I do every year, for my yearly checkup at the Adult Congenital Heart program. When I read your story I got teary-eyed, I felt as if I was reading my own story. I have always wanted to help, outside of donating and walking, I am so glad the patients and families have someone like you to speak with and learn from. Like your parents, my parents never wanted me to feel different. I think it is so important for children and their parents to see the success of babies born with a congenital heart defects. Today, I am a healthy 32, and in 2009 I gave birth to a beautiful and healthy baby boy. I have Children’s to thank for that! Thank you for all you do Robin!

    • Molly Foley

      Thank you Andria for your post! It means so much to PAIVS families that you and Robin are doing as well as you are! Especially that you were able to have your son and that you still feel supported and are getting amazing care at Children’s — even as adult. Thank you for sharing your story!

  • Molly Foley

    Robin’s story will forever hold a special place in my heart. My three year old daughter shares the same PAIVS diagnosis and will undergo her Fontan surgery this April. I met Robin when she worked at the AFCC and she was unbelievably generous to share her story with me. Having such a beautiful, talented, smart, and healthy young women standing right in front of me, sharing her story with me — made all the difference in the world to a very scared and very worried first time mom. Robin’s story was quiet honestly the only bright light in a very dark time in our lives — we were first time parents and there were many, many unknowns ahead of us. But having Robin as a shining example of what is possible — gave us strength at a time when we needed it most. Robin was also kind enough to connect me with her mother Susan — who was just as wonderful and helpful to us. Talking with her over email — knowing she had been in my very shoes and had survived this — and that her daughter survived — it gave me the perspective I so desperately needed — to know that there was the potential for everything to be ok in the end. I will be forever grateful to both Robin and Susan for giving us this gift of hope. Robin, you continue to be a role model to my daughter and while we may not know you very well — you are never far from our minds and we are always happy to hear how well you and your family are doing. Thank you for sharing your story. It means so much to us. Molly