The curve progressed over time
Sofia’s scoliosis did not appear overnight. The curve worsened gradually despite positioning, a spinal corset, orthoses and ongoing therapy. In a child with severe neuromuscular impairment, the body may not be able to actively counter the forces that pull the spine out of alignment.
What 90 degrees means in everyday life
A severe curve changes the shape of the trunk and can make comfortable sitting and positioning much harder. It may also increase pressure in areas that already need constant protection because Sofia cannot reposition herself independently.
Why breathing matters
A major thoracic or thoracolumbar deformity can reduce the space available to the chest. For a child with a complex medical history, protecting respiratory function is one of the reasons the family and medical team take the curve seriously.
What the Basel team documented
After the consultation at University Children’s Hospital Basel, the medical report described severe neuromuscular thoracolumbar scoliosis of around 90 degrees together with spastic tetraparesis. The report stated a clear surgical indication.
The family did not receive a simple “yes, we can operate.” They received a plan that first requires preoperative investigations, anesthesia assessment, interdisciplinary review and nutritional preparation.
What the family hopes surgery can improve
The goal is not to make every medical difficulty disappear. The family hopes for a more stable trunk, better positioning, less progression and a body that is easier to care for and more comfortable for Sofia.
Why Switzerland
The family sought a team experienced in complex pediatric spinal deformity and neuromuscular scoliosis. UKBB Basel became the treating center after consultation and review of Sofia’s case.
The next step
Before surgery, Sofia must complete the planned evaluations in Switzerland and continue building nutritional and medical stability at home. Those steps carry their own substantial costs in addition to the operation itself.