Deciding If a Child with CP Should Have Another Operation
Most People with CP Have Multiple Operations
Many things surprised me when I started learning about cerebral palsy, often referred to as CP. What especially surprised me is finding out that most people with CP have multiple operations to try to improve their lives. I tucked that information away while I sought out all of the treatments that would help my toddler.
My daughter was diagnosed with cerebral palsy when she was 14 months old. In her case, the disorder was caused when she had a level IV brain bleed (stroke) at birth. She was premature, and that was probably the precipitating factor. Even before her diagnosis, she had been receiving physical, speech, and occupational therapy, as it was clear that she was severely delayed in her development.
Options for CP Treatment
Once we had the diagnosis, I looked at all of the treatment options. We were fortunate to live near a school run by the United Cerebral Palsy association. She attended a full day program there, getting the best in therapy. Her particular brand of CP is called spastic diplagia, causing the muscles in her lower body to be very tight. So, the goal of her therapy was to reduce this spasticity to allow her to move more freely.
Operations for CP
When she was about four years old, a neurologist my daughter saw told us about a procedure that would reduce her spastic muscles through an operation that would sever the nerves along her spine that did not work correctly. Then, the other healthy nerves remaining take over. I was frightened at the thought of such a delicate operation on her small back. However, all of her doctors agreed the selective dorsal rhisotomy (SDR) would help her. The thought of surgery was daunting. My daughter had already had surgery on her head that was unrelated to her CP, so I already knew how draining surgery can be.
At this point, she was not walking independently--just using a walker to get around. Within a couple of weeks after the surgery, she was able to walk with crutches. Two years later, she began walking independently. So, the surgery was, by all measures, successful.
Another CP Operation on the Horizon
Over the next years (from six years old to nearly 10), we were told that another operation would help her to walk straighter and correct her drastic toeing in. I was determined that she would avoid another operation. We tried every kind of therapy imaginable--Feldenkrais, yoga, Therasuit, Theratogs, WBV machine (whole body vibration), treadmill, hippotherapy (horseback riding therapy), hydrotherapy (water therapy), and regular physical therapy.
Unfortunately, her feet continue to turn in and she often falls. She has been evaluated by many doctors in their offices and in the gait lab (a special lab that provides a computerized pattern of her walking). Everyone we have seen agrees that she needs another operation: a bi-lateral derotational osteotomy.
My fear of her previous surgeries paled next to my feelings about this one. In this operation, her leg bones (upper and lower) are severed on both sides, twisted, and held straight by metal. The recovery is long and arduous. She will have to be in a rehab hospital for many months and will not be able to begin relearning to walk for months.
The things going through my head: My daughter is a spunky little girl who manages quite well even with her crooked gait. She runs, climbs, and keeps up with her peers. Why not just let her be who she is? Why put her through this horrible operation?
From the other side of my head: But she feels different then her friends. She says she hates her crooked leg. If we don't do the operation, she may have pain in her hips as she grows. And, my biggest fear: that she will resent us as an adult, if she does not have the operation. Why didn't my parents do everything possible to make me "normal"?
So in the next two weeks, we have three more appointments: two at rehab hospitals to decide where she will get the best care and one at the hospital where the operation will be. We will do what we always have done with her and that is "do the next right thing," all the time not really knowing if that is what we are actually doing. It is an awesome responsibility to be a parent, and it strikes me that all parents have to make life-changing decisions about their children. Cerebral palsy, though, puts us in this situation more often and more strikingly then most parents.
For More Information
- The Department of Orthopaedic Surgery
General info on internal rotation.
- UCP | Home
United Cerebral Palsy organization.
- TheraSuit Method Intensive Suit Therapy for Cerebral Palsy and other neurological disorders
Information about TheraSuit method--helpful therapy for people with CP.