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TAR Syndrome; Blount's Disease
AJ Gossen

Adam Jeffrey Gossen (A.J.) was born July 12, 1995 to Rochelle and Jeff Gossen. Rochelle had a normal pregnancy and expected a normal delivery; however, immediately after A.J. was born the doctors placed him in an incubator. His skin was blue due to poor circulation and they didn’t know what was causing him to have difficulty breathing. They also realized that bones were missing from his arms. He was diagnosed with TAR Syndrome, a genetic disorder which stands for thrombocytopenia-absent radius, which means he is missing the radius in his left arm and the radius and humorus in his right arm. Within seven hours of his birth he was transferred via ambulance to Children’s Hospital’s NICU.

Rochelle developed an infection in her blood after delivery and was not able to leave the hospital for four days. During this time they set up a special phone line from her room so that she could talk directly to the nurse who was caring for A.J. in Birmingham. Although family was there to visit him they made sure no one held him but the nurses who were caring for him. They wanted to allow Rochelle a special bonding experience with her new baby boy.

“Being able to check on him anytime meant the world to me. They also did an excellent job checking for everything that could possibly be wrong with A.J. Every specialist he needed was there. We spent about a month at Children’s. During this time he had about five platelet transfusions. As a part of TARS he also has an inability to make platelets, which make your blood clot. His platelet count would drop to 5,000 at times. Anything under 100,000 is extremely dangerous.”

After a month at Children’s, they got to go home.

A.J. was a very healthy little boy who only required regular check-ups and doctor visits, but his legs were very bowed and continued to get worse. At age 9 he was diagnosed with Blount’s Disease, which is a genetic disorder as well.

Rochelle said, “It was heart-breaking. We were devastated. He had already been through so much.”

At 10-years-old he had corrective surgery on his left leg and within a year he had the right leg done. He had complications in his second surgery during a platelet transfusion. “We were so thankful that we were at Children’s and that we had a good nurse.”

A.J. has had four surgeries and Rochelle says he is extremely smart, gets straight A’s in school and is a tough little boy. He is well-liked and respected at school and was recently voted “Student of the Week.”

“He’s also very artistic. I think he surprises people with his talents and abilities. He does the same work all the other kids do and is adamant that he not receive special treatment. He inspires me daily and is the reason I was motivated to go back to school and become a teacher. He taught me more than any book would ever teach. Our entire family is so grateful for the care we received at Children’s.They truly took care of our whole family, not just A.J. The people there really do care.”
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