Tuesday, October 9, 2012

SDR - Guest Post 1 - Sarah Kate

A year ago, when we were considering a selective dorsal rhizotomy for Ben, I scoured the internet for information.  And while there was lots of technical, medical-type information out there, what I was really looking for was the stories from the families.  I wanted to know how old their child was, where they had it, what type of SDR was done, and much, much more.  And while I was somewhat successful, it frustrated me that it was so difficult to find.  

To hopefully help other families that are considering this surgery for their child, I put together a list of questions and emailed them out to some families I know whose child has had SDR.  I plan to post their stories here on my blog over the next few weeks or months.

To start, I bring you Sarah Kate.  Sarah Kate's, mom, Andi of Bringing the Sunshine took my questions and answered them via a blog post.  I have followed Sarah Kate, and Andi's blog for about a year as hers was one of the families I "found" on my quest for more information on SDR.  I continue to follow this blog and love seeing and reading all about Sarah Kate's athletic endeavours as I try to see what the future may hold for Ben. 

Thank you so much Andi for contributing to my little project!


In December of 2002, my daughter, Sarah Kate, was born ten weeks early due to a placental abruption. Although she sailed through the NICU with few problems, she was small for her gestational age at birth and before she was discharged the neonatal physical therapist suggested some exercises for the tightness in her legs. No one indicated that the tightness was cerebral palsy - no one even suggested that it might be permanent - so we went on our merry way, confident we had dodged a bullet. Like many parents of children with CP, though, we were referred to early intervention, a neurologist, and an orthopedist when she wasn't hitting gross motor milestones by the age of nine months.

I have an analytical nature, so I began researching to determine what was going on. Doctors and therapists were still reluctant to say "cerebral palsy," opting instead for "hypertonia," but I figured out pretty quickly that was code for spastic CP. The neurologist referred us to spasticity clinic at Children's Hospital in Birmingham, Alabama, where she was evaluated separately by a physiatrist, orthopedic surgeon, neurosurgeon, and pediatric physical therapist, who then met together to recommend a course of treatment for Sarah Kate. After all of the reading and research I had done, I was almost certain they would recommend selective dorsal rhizotomy (SDR), and they did. She was scheduled for surgery one week after her third birthday.

Before SDR, Sarah Kate used a stripped-down gait trainer (essentially a walker) to get around. She was good with it, and speedy :) but she couldn't walk independently at all because her balance was so poor. She took oral baclofen for about a year during that time, which helped a little, and was weaned off of it in preparation for the SDR. The physical therapist who oversaw her post-operative therapy told us to put the walker in the attic the night before the surgery, because she never wanted her to use it again (she didn't).

We weren't certain what to expect, and I was careful not to get my hopes up too much. The specialists and therapists told us that a one-degree improvement (walker to canes) would be considered a success, though she could improve even more than that. I searched for before and after videos of other children who'd had the procedure and tried to compared their "befores" to Sarah Kate. Of course, every child with CP is different, so there were no perfect, or really even any strong, matches.

Sarah Kate's surgery was performed the first week of January 2006 by Dr. Oakes in Birmingham, Alabama. We briefly considered going to St. Louis to have Dr. Park do the procedure, but Dr. Oakes had been doing the procedure for almost two decades (almost as long as Dr. Park) at that time, so we were confident in his ability. Birmingham was also only about 75 miles from our home, and we felt that it was important to stick with the same team for rehab. Post-operative physical therapy is such a crucial piece of the SDR puzzle, and we wanted to work with therapists who had a great deal of experience with it. Sarah Kate was one of the last children (perhaps THE last) to receive the traditional procedure by Dr. Oakes, so she has the longer scar, but it was worth it to go ahead and have it done and get moving!

Sarah Kate's recovery went well, though she was forced to remain lying on her back for an extra couple of days. The procedure was performed on a Wednesday, she was discharged on Saturday, and she was first allowed to sit up on Monday morning; another little girl the same age had her surgery the same day, was released on Friday, an sat on Saturday (we just happened to know the family). After leaving the hospital, her pain was managed by simply stacking children's Motrin and children's Tylenol (OTC) for several days. We were required to stay nearby, as traveling more than twenty minutes or so by car was not recommended, so we found a small apartment near the hospital.

After being checked out at "home" on Sunday by the physical therapist, Sarah Kate began rehab on Monday morning. She went once in the morning and once in the afternoon, Monday-Friday, for three weeks, and each session lasted about two hours (four hours total per day). The first day blew us away, because within just a few minutes of beginning the session, Sarah Kate was sitting "criss-cross applesauce" on the therapy mat - something she'd never been able to do before that day.

In the beginning, Sarah Kate didn't seem to mind the therapy. She was allowed to watch movies during heat and massage time, and she enjoyed the undivided attention from her team of therapists. Sometimes her therapy included using a stander, which meant she was able to play with toys on the tray. On the first day of the second week, however, things went south. The therapist was trying to get her to walk with canes and she Did. Not. Want. To. I was encouraged to leave the gym, so I retreated to the waiting area which was out of sight but not out of earshot. My sweet little girl didn't cry - she GROWLED. I've never heard that sound from her before or since. It was a battle of the wills between the therapist and my preschooler. Eventually, the therapist won, and after that Sarah Kate's progress was amazing. 

Once the initial three weeks were up, she continued daily therapy with her regular therapist at home, returning to Birmingham once or twice a week, until May, when she returned to Birmingham for another three week long intensive session. She continued to receive therapy almost daily for several months.

January 2013 will mark seven years since the SDR, and although progress comes more slowly now than it did in the beginning, it does still come. Independent walking began about three months after the SDR (spring of 2006), standing from the floor without assistance about a year later (summer of 2007), and being able to stand still (a surprisingly difficult skill) a little over a year after that (summer of 2008). It took almost three more years for her to master stepping up and down a curb without holding onto anything, but she did in the early summer of 2011.

The only intervention Sarah Kate has received since her SDR (other than PT and a series of AFOs) is a few rounds of Botox and one round of serial casting - most were within the first 18 months following the surgery. The last round of Botox was less effective than the prior ones, so we feel we've reached the end of the line on Botox. We make the trek to Birmingham to see the orthopedist (now a four-hour drive, as we moved in 2008) about once a year, and though he hasn't ruled out orthopedic procedures in the future, he wants to wait a little bit longer before we decide.

We have no doubt that SDR was the right choice for Sarah Kate. Although she still has a distinctive gait, if you see her in a crowd of kids she won't stand out right away. She still can't jump, and although she runs, it's in the loosest form of the word, and she is very slow. When she tries to run or walk fast, her right arm shoots out to the side like a "chicken wing" because the brain just isn't able to process all of the motion her body requires. 

We never dreamed Sarah Kate would be able to play sports, but she just completed her third summer on swim team and opted to play softball this past spring - not Miracle League or special needs softball, either - regular rec league. She loved it so much that she is playing again this fall. Her hand-eye coordination is surprisingly good, enabling her to hit the ball consistently, so although she doesn't score (or for that matter, make it to first base) often, she has a lot of RBIs to her credit. It's a dream come true for me.

Videos of Sarah Kate:
Progression from pre-SDR up to August 2010. http://youtu.be/kFNCtnkPfzE

Spring softball 2012 (1 of 2). http://youtu.be/syG52pC30tA
Spring softball 2012 (2 of 2). http://youtu.be/nUpQYhfglJM