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When parents are asked about their impending pregnancy, they overwhelmingly choose "good health" for their newborn. As technology evolves, parental expectation of the "perfect child" is increasing. When infants are born with a birth defect or experience a problem or disabling condition later, the parents are subjected to the reality of what the child may face and dreams die.
Nurses possess a keen sense of vision, which allows them to assess their patients and provide appropriate care. When patients face a disabling condition, nurses must be visionary. The Merriam-Webster Online Dictionary describes visionary as "having or marked by unusual foresight and imagination." As nurses, we must see beyond the obvious. When we console the parents of a child born with disabilities, we enable them to see beyond the obvious and envision a future for their child. Often parents of a child with a disability welcome ideas that envision a future for their child.
I was born without my left hand. As a child growing up with a birth defect, I fondly remember the gift of visionary hope that the nurses and other health team members gave to me and my mother. Their vision of my success empowered us and gave us strength. When I was 5 years old, I became acutely aware of my differences. Viewing a TV commercial encouraging people to help those with handicaps, I once saw a little girl just like me missing a hand. I began to wonder: Is this my destiny? When my mom came home, my first question was, "Am I a handicap?"
My clever mother answered, "Only if you want to be."
A huge sense of relief filled me. I had a choice. I could choose to be full of sorrow, or I could go outside and have fun. I chose the latter.
In addition to visionary hope, another important gift a nurse can offer a parent is the gift of touch. Touch equals acceptance. As you discuss the disability of the newborn with the parents, be sure to touch the disfigurement. This one act shows parents that someone outside their family can accept the baby and his or her disability. As a child born with a birth defect, I fondly remember Dr. Brooks of the University of California-Los Angeles gently touching and examining my deformed hand. My heart rose with happiness and hope as I saw that someone outside my household could touch my hand. I felt accepted.
Today, I take my nursing students to a postpartum, where I recently worked as a registered nurse. On occasion, I have the opportunity to serve parents as they are faced with the news that their newborn has a birth defect. One memorable evening I helped a mother transfer to her bed from the gurney. She shared with me the tragic news that her beautiful boy had been born with a small weak body and was in the neonatal intensive care unit. I felt prompted to share my experience with her. I told her that we all have crosses to bear that strengthen us. For myself and for her son, it is a built-in cross. I was able to encourage this mother that even with disabilities, we can become useful, whole people.
My life is filled with gratitude for the gifts that healthcare workers and my family have shared. They gave me the strength to believe in myself and to become visionary. I learned to see beyond the obvious. After being turned downed at one nursing school, I was empowered and gained the strength to one day become a nurse.
Gifts are to be shared. As a nurse, you have been given great gifts. Share your gifts with the mothers, fathers, and their newborns as they face life's trials. Envision a future for them. Be an artist. Change a life. See beyond the obvious.
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