Paying it Forward

My parents were told that I would not survive the night of my birth. The doctors were dumbfounded by my collodion membrane and red, angry skin. Two months later, my parents tookme home with a diagnosis of congenital ichthyosiform erythroderma (CIE). I didn’t have an easy childhood, medically speaking. I had a tough time managing heat, fevers and infections, suffered osteopenia and bone fractures from steroid treatments, and I had several hospitalizations. My parents were dedicated and loving caretakers, and fifty-one years later, I am healthy and active in all aspects of my life. It is easier to see the benefits of my childhood struggles from the vantage point of age and hindsight, but it sure was hard to feel so different as a child.

I have devoted my professional life to the care of children in hospitals, and I know that this career choice was no accident. As a child life specialist, I was trained to alleviate and prevent the kind of trauma I experienced as a hospitalized child. Academic and clinical training made me a good specialist, but therapy made me a conscious one. I have always felt that it is an ethical duty when caring for children to separate out what are the child’s needs from what are my needs. This is no easy feat, and is a life long journey. I studied the child-centered approach, which helped me follow the children’s lead as I sought to prepare and support the patients and families through medical procedures and experiences.

In the past ten years, I have left the front lines to become a professor in a graduate program in Child Life at thVilas-Deb-web-2e Bank Street College of Education in New York. Now I have the pleasure every year of working closely with a cohort of students as they train and learn about how to support children and families in medical environments. It is exciting and wonderful to see their potential come to fruition and to observe their skilled work with children in hospitals throughout the New York area. I try to remember what it feels like to be a learner, and to give guidance to those students who are working to navigate personal and professional growth in a challenging field.

To this day, I am thankful for the empathy in me that helps me connect and teach. I truly believe that it came from the empathy and care I received as a child when I felt frightened, different and lonely. I was blessed with many angels to help me along, and it is great to pay it forward in my work. If you would like to know more about the field of Child Life, go to and follow me on Twitter at @DeborahVilas. It is a fabulous profession.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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