Her doctors in North Carolina had mentioned some things that could be done "down the road" to help her. Most of these options were orthopedic surgeries to help correct problems that would inevitably arise. For example, the tightness in her muscles was already causing her hips to dislocate. She would need surgery to align her hips. Her muscles were so tight that she would eventually need surgery to lengthen her heel cords and her hamstrings. This would involve cutting the muscles. Oh, and all of these things would provide a temporary fix, but as she grows she may very well need the these surgeries repeated, and would most likely need some additional orthopedic surgeries to fix other bone alignment problems that would come up.
This just didn't feel right to me. I was being told that my little girl was facing a lifetime of surgeries, all of which are to correct problems that would eventually arise as a result of her tight muscles. My thought was that we should be looking for a way to prevent these problems from happening in the first place. I became a bit of a fanatic with research. I reached out to other parents of kids with CP, I harassed doctors looking for alternatives, I read everything I could on this type of Cerebral Palsy. There had to be something we could do for her.
In early 2006 I learned about an amazing doctor at St. Louis Children's Hospital who was performing a surgery called Selective Dorsal Rhizotomy. Dr. T.S. Park is a world-renowned neurosurgeon who takes a different approach to improving the lives of children with cerebral palsy. Google him. He's been written up in countless medical journals, Time Magazine, and was featured in an NBC Nightly News story. His surgery is not orthopedic. It is not done to fix a problem that has arisen from tight muscles. Instead, Dr. Park looks at CP from where it starts, and that is in the brain. The tight muscles are simply a result of Kaitlyn's brain sending an incorrect message to her legs, and her legs in turn sending an incorrect response back. The SDR surgery involves making an incision in the child's back, removing 1 to 2 vertebrae from the spine, and exposing the nerves that are housed deep within the spine. Dr. Park uses an electrical stimulation technique to test each nerve, and determine which ones are sending the signals to the muscles to tighten. He then severs just the right percentage of these nerves, permanently rendering them incapable of sending such messages.
We spent 6 months meeting with Kaitlyn's doctors in NC. We went through an exhaustive application and evaluation process with Dr. Park's team in St. Louis. We felt very strongly that this was the right treatment for Kaitlyn, and luckily Dr. Park agreed. Upon examining her, Dr. Park told us that he felt that Kaitlyn was an excellent candidate for the surgery (this was a HUGE relief, because Dr. Park is extremely selective when it comes to choosing those who he feels would see the most benefit from this surgery).
However, we knew that this surgery would not come without a huge cost. The costs would actually be several-fold....
- Most importantly, our focus was on Kaitlyn. We found out that this surgery would cause us to quickly see that Kaitlyn's muscles are actually very weak. She apparently was using the tightness in her muscles as opposed to actual muscle strength to move. Once the tightness was gone, we were told to expect to see that Kaitlyn would be unable to move on her own, and that it would take several months for her to get back to her pre-surgery abilities.
- Part of Dr. Park's selection process involves a review of the family. We had to commit to a 3-year physical therapy protocol following the surgery. If he does not believe that the parents are committed to this, or that there isn't a team in place ready to participate in therapy then he will not accept the patient. We agreed to seeing that Kaitlyn got physical therapy 4x/week the first year, 3x/week the second year, and 2x/week the third year post-operatively.
- The financial cost - Holy cow, health insurance sucks. Actually, we had pretty good insurance at the time. It covered 70 PT visits/calendar year for Kaitlyn. Not bad. However, the first year alone she need 208 visits. We estimated that we would be paying $100/visit for 138 visits that first year out of pocket. That adds up to nearly $14,000 the first year alone. Add to that the travel costs to and from St. Louis for three trips, the co-pays for the surgery itself, and the subsequent 2 years of therapy needed, and you can see where we freaked out a little.
After weighing all of the costs listed above, we decided that this was the best shot we had at helping Kaitlyn to walk. Dr. Park told us that he believed that Kaitlyn would one day become an independent walker if she had this surgery. Also, he strongly felt that having this surgery would significantly lessen the chance of subsequent orthopedic surgeries. These two facts were all we needed to hear. She was going to get the surgery. Further, she was going to get it sooner rather than later. Dr. Park likes to do this surgery before other orthopedic problems arise. Also, with the intense physical therapy schedule, I couldn't imagine trying to balance school with all of this. So, off we went to St. Louis.
Following is a video I put together in advance of Kaitlyn's surgery...
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