The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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A Parent's Hope
Sophie Playing With Sound Equipment
Sophie Playing With Sound Equipment
A Parent's Hope

Immediately after my daughter was born in Charleston, WV, the delivery room filled with doctors and technicians. She was examined and given oxygen. Something was wrong. It was suspected she had Down syndrome. There was a problem with her oxygen levels and blood pressures. The neonatologist, Dr. Shaw, decided she needed to go to another hospital. He explained her situation was beyond their capabilities. His honesty was appreciated. We decided on Children's Hospital Pittsburgh. The weather was too bad for her to fly. Sophie would have to travel by ambulance in a snow storm. Dr. Shaw did not leave our side as we waited for the ambulance. He tried to calm us, using humor to keep our spirits up. He arranged for a minister to baptize Sophie that night, because odds were it would be our only chance. He even got her God parents on the phone from Manhattan for the ceremony. Sophie did make it to Pittsburgh. I followed shortly afterward. My wife travelled with my parents after being released from the hospital. Sophie's God parents drove from NY. We were blessed. The doctors diagnosed her problems. It was confirmed she had Down syndrome. Among other issues, she had five holes in her heart, her patent ductus arteriosus (PDA) between her heart and lungs, which closes after birth, had not closed, causing persistent pulmonary hypertension. As I was driving to Pittsburgh, my wife was told that Sophie's treatment options were limited, but she could be given viagra to try to stabilize her with parental permission (it was not yet FDA approved for the condition). My wife consented. Sophie was stabilized until she could receive surgery to close her PDA. Then was on oxygen 24 hours a day for a year and a half. While in Pittsburgh I noticed something. I saw people with Down syndrome working. One day as I was walking to the hospital, a delivery man opened a door for me. I noticed he had Down syndrome. It took me by surprise. He asked if I was visiting someone. I said I was visiting my daughter and mentioned she had Down syndrome. He told me he was a patient at that hospital when he was a child. Sophie still has medical issues resulting in trips to Pittsburgh. Each trip, I see more people with Down syndrome holding jobs. They give me hope and inspiration. I have met Chris Burke, an actor with Down syndrome and Sujeet Desai, a musician with Down syndrome. I have learned there are people of all different abilities with Down syndrome. Sophie is now eight years old. She loves to read, use the iPad, and operate anything electronic. She's a daddy's girl. Our life is different than what we imagined it would be as parents. There are struggles with Sophie's health, with acceptance for our daughter, with getting others to recognize her abilities. Our role as parents is much more difficult than we could ever imagine. It is also much more wonderful.




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