The National Advocate for People with Down Syndrome Since 1979

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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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Crystal, United States, WV
2/24/2012 8:57:02 AM
Great story!!

Cheri Harpold, United States, WV
2/24/2012 9:26:34 AM
Beautiful story!!! Sophie is so very lucky to have you two as parents!! She is a blessing!!!

Jana McGinnis, United States, WV
2/24/2012 9:33:47 AM
I am Assistant Principal at the elementary school Sophie attends. It is a joy to see Sophie at school each day. She is full of potential and is progressing every day! Thanks for the wonderful story!

Patti Burkhart, United States, WV
2/24/2012 9:42:15 AM
Awesome, inspirational story...

Latrica Kestner, United States, WV
2/24/2012 9:42:50 AM
You both are wonderful parents and advocates!

Marian, United States, TX
2/24/2012 10:27:06 AM
Thanks for sharing your story. Sophie is a beautiful girl with wonderful parents.

Kim Kappa, United States, WV
2/24/2012 12:04:24 PM
A wonderful and inspirational story! Thank you for sharing it!

Shannon Burton, United States, WV
2/24/2012 12:23:19 PM
I am Sophie's teacher this year at school and this little girl has captured my heart! She is very loving and very bright. She loves to work on the iPad, Touch screen computer and the Smart Board. She is capable of so much and has progressed a lot this school.

Uncle Frank, United States, PA
2/24/2012 1:57:34 PM
Sophie is my niece. She is a Special little girl with great parents. We don't get to see her often, but when we do she always makes us Smile :-) Her hugs are Priceless!!

Yvonne Duckwyler, United States, WV
2/24/2012 7:39:25 PM
Sophie is an amazing little girl and has overcame so much! She is friends with my kids and they both enjoy being around her! She has awesome parents that are such great advocates!

Pam Walker, United States, TX
2/25/2012 10:26:40 AM
Sophie is so blessed to have parents who have always believed in her. Steve and Sandy, I pray God's continued favor upon her and your whole family.

Louis Palmer, United States, WV
2/25/2012 10:44:13 AM
Inspiring. Love you guys.

Sally Slack, United States, FL
2/26/2012 2:07:20 PM
Sophie is my precious granddaughter and I am the mother of Sophie's father, Steven. Sophie has such a determined spirit in spite of her health issues that she is an inspiration to everyone that knows her and she is so charming that she makes everyone smile.

Judy Hamilton, United States, WV
2/26/2012 4:58:44 PM
Many mornings I am greeted with a hug from Sophie when she enters our Kindergarten room for morning circle time. The children in our room have come to love Sophie. We all look forward to her morning visit! Just seeing her picture here gives you a glimps

Nancy Walker, United States, CT
2/26/2012 4:58:44 PM
What a brave, beautiful little girl. The love in her family is wonderful to see and the story of her life is inspiring.

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