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Kyla's Story
My daughter just turned 4 months old today. At birth she was diagnosed with infant scoliosis. This is what her report says. There is right convexity scoliosis of the thoracolumbar spine without evidence of segmentation anomalies. The scoliosis measures apprx 37 degrees. No evidence of an acute fracture, dislocation or other bony abnormalities are identified. No large para vertebral masses are seen. Incidentally noted is the lateral subluxation of the right femoral head and abnormal anterolateral to the scapula.
When I was pregnant with Kyla, they found a cystic hygroma on the back of her neck at 13 weeks. I was referred to a specialist in Wichita, Ks to undergo an amniocentesis. All the doctors were convinced that Kyla would either have turners syndrome or something like downs. After the Amnio, and all the results came back normal baby girl. We were thrilled. However, I noticed that after the amnio, she kind of just curled up in a little ball and stopped moving. I could feel her feet kick me in the ribs as she grew but never did I feel her actually roll around. Her head stayed down and legs and feet were always in the same exact spot. I had never been pregnant before so I had no idea that anything was wrong. I figured since I was at a high risk clinic they would have told me if anything was wrong, I was there at least twice a month, and more frequently towards the end. I did notice that she had no fluid around her face. Her face was smashed up against my cervix for months!
After she was born, a bomb was dropped on me. I had expected my healthy normal baby girl to be born, and out of the hospital within a few days. Oh how wrong I was. She came out with not only scoliosis, but flexed wrists, knee flexion contractures, which means she cannot extend her legs at the knee, and severe club foot deformity. They actually call it congenital vertical talus. Her hips are also suspected to be dislocated.
While we were in Wichita they did yet another higher resolution Karyotype test, and those results all came back normal again. Now we are being referred to a geneticist. I honestly just feel like she is completely normal, she just has physical problems due to the lack of fluid. She stopped moving after that amnio, and if someone was stuck GROWING in one position for 5 months, that is exactly what would happen.
This wednesday we are headed to Childrens Mercy hospital to meet her new Orthopedic surgeon Dr. Schwend. I was just wondering if anyone has heard of him or knows of his workd. My daughter is my whole entire WORLD and I just want to be sure she is getting the best possible care. If anything ever happened to her, my whole world would end.
Thanks and God bless!
When I was pregnant with Kyla, they found a cystic hygroma on the back of her neck at 13 weeks. I was referred to a specialist in Wichita, Ks to undergo an amniocentesis. All the doctors were convinced that Kyla would either have turners syndrome or something like downs. After the Amnio, and all the results came back normal baby girl. We were thrilled. However, I noticed that after the amnio, she kind of just curled up in a little ball and stopped moving. I could feel her feet kick me in the ribs as she grew but never did I feel her actually roll around. Her head stayed down and legs and feet were always in the same exact spot. I had never been pregnant before so I had no idea that anything was wrong. I figured since I was at a high risk clinic they would have told me if anything was wrong, I was there at least twice a month, and more frequently towards the end. I did notice that she had no fluid around her face. Her face was smashed up against my cervix for months!
After she was born, a bomb was dropped on me. I had expected my healthy normal baby girl to be born, and out of the hospital within a few days. Oh how wrong I was. She came out with not only scoliosis, but flexed wrists, knee flexion contractures, which means she cannot extend her legs at the knee, and severe club foot deformity. They actually call it congenital vertical talus. Her hips are also suspected to be dislocated.
While we were in Wichita they did yet another higher resolution Karyotype test, and those results all came back normal again. Now we are being referred to a geneticist. I honestly just feel like she is completely normal, she just has physical problems due to the lack of fluid. She stopped moving after that amnio, and if someone was stuck GROWING in one position for 5 months, that is exactly what would happen.
This wednesday we are headed to Childrens Mercy hospital to meet her new Orthopedic surgeon Dr. Schwend. I was just wondering if anyone has heard of him or knows of his workd. My daughter is my whole entire WORLD and I just want to be sure she is getting the best possible care. If anything ever happened to her, my whole world would end.
Thanks and God bless!
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