9 yo boy w/ severe spastic quadriplegia sp “shaken baby syndrome” and history thoracic fractures now with severe kyphosis and trouble sitting

I saw a very unfortunate 9 yo boy in clinic on Friday who was the victim of “Shaken Baby Syndrome” age 7  months, with resultant severe spastic quadriplegia, and some thoracic compression fractures.
He has gradually fallen into increasing severe kyphosis, with increasing difficulty sitting in wheelchair or any chair, and has obvious discomfort now sitting even less than an hour.
He has been braced, but it has become increasingly uncomfortable.
His sitting X-Rays from last year show 90 degree kyphosis which improves to 70 degree lying down.
New Xrays are pending.
Given his progressive symptoms and increasing trouble with sitting, I am considering trying to help this boy with a posterior instrumentation and fusion, possibly a Luque box, but he is obviously a high risk surgical candidate with his severe CP.
He is being cared for in a State nursing facility, with staff that all feel that he really needs to get some help, since it is affecting his daily life including feeding, etc.
I have sent his pictures to some of my friends in the Scoliosis Research Society (SRS) to get their input in this difficult case to help come up with the best solution for this boy.

Lloyd A. Hey, MD MS
Hey Clinic for Scoliosis and Spine Surgery
http://www.HeyClinic.com

3320 Wake Forest Rd Ste 450 Raleigh, NC 27609

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