It’s a celebration

This week marked our one year anniversary of Solly’s selective percutaneous myofascial lengthening (SPML) surgery with Dr. Nuzzo in Summit, New Jersey. Our decision to move forward with this surgery was a pivotal point in Solly’s journey towards independent movement. In the weeks leading up to this anniversary, I’ve been reminiscing on the past year and celebrating all of the gains Solly has had and changes he’s gone through because of this surgery.

One year ago, my stomach was in knots during this optional surgery to help Sol’s spasticity (muscle tightness). I felt like I was the worst Mom ever for choosing to put my son under general anesthesia for a procedure that would be painful for him, at least initially. But as Dr. Nuzzo pointed out when we exchanged emails in a virtual consultation, Solly was living in “paralytic jail”. He wanted to move so badly, but his body fought every impulse to move. If we did nothing, it was inevitable that Sol would never be able to move on his own and his independence would be extremely limited. Because of his spasticity (muscle tightness), his bones would deform and he’d likely have to have a series of painful, invasive surgeries to secure his leg joints. Spasticity doesn’t go away on its own: medical intervention is the only way to help manage it. I’d spoken with parents whose children had SPML and after the surgery, their only complaint was that they hadn’t done it sooner. I knew I had to push past my fears and move forward with the surgery.

Here’s what Solly looked like 2 months before we had SPML: 

Fast forward one year, Solly has gained so many gross motor skills as a result of SPML. He went from not being able to bend his legs at all, let alone move them reciprocally to reciprocal walking while being pushed in the gait trainer to taking one or two independent steps in his gait trainer and then to walking all by himself in the gait trainer. He has made more progress in one year than I could have ever imagined. I am so thankful that Dr. Nuzzo and Dr. Ygnve – the only two doctors in the U.S. who perform this type of non-invasive surgery – have developed and provide this surgery for children with cerebral palsy. I can’t imagine how many lives they have changed for the better.

Here’s Solly walking nearly a year after SPML:

Next steps and big thoughts

As we pass by our one year anniversary with SPML, there are a couple of thoughts swirling in my head:

My first thoughts are on what’s next in terms of spasticity and pain management. One year later, because Solly’s brain damage is extensive and the resulting spasticity is quite severe, his muscle tightness is starting to return. Because of the lasting effects of the surgery and the intensive physical therapy that we’ve done, Solly continues to make gains, move independently, and has pretty decent range-of-motion. But, it’s likely that his muscles will continue to grow tighter, so in an effort to continue to protect his joint and bone health and minimize the pain he might feel because of his tight muscles, we are considering some options for him.

A typical developmental pediatrician or physical medicine and rehabilitation (PM&R) doctor who treats children with cerebral palsy – spending, at most, one hour every six months with her patient – might prescribe baclofen or a round of Botox to help alleviate muscle tightness. From ages one to two, we tried oral baclofen and all we saw was decreased core strength and suppressed cognition. Solly made no gains in that one year and he also had some limiting side effects. We have not tried Botox, but it often requires general anesthesia and generally only lasts up to 3 months. Given our experience with severe spasticity, we’d be lucky for it to last 3 months, and then we’d just have to repeat it over and over again. Repeated Botox injections lose potency and also weaken muscles that are already weak, so while it may be a viable option for some children, Botox is a last resort option for us.

That being said, we are exploring two very realistic and promising options that aren’t typical protocol, at least, not if you ask your standard developmental pediatrician or PM&R doc. The first is to consult again with Dr. Nuzzo to see if another round of SPML might be an option for him. The second is a more invasive surgery called Selective Dorsal Rhizotomy (SDR), which involves a doctor partially cutting the nerves that cause spasticity. While the standard procedure for SDR is usually only performed on children whose legs are weakened by cerebral palsy (called diplegic cerebral palsy), there is a doctor in St. Louis, Dr. Parks, who has developed a type of SDR that can be performed on children whose core and arms are also affected by cerebral palsy. I’m working on reaching out to both doctors to see in which direction, if either, we could go in next.

My second thoughts are on the doctors and specialists that we spoke to prior (and after) SPML who had nothing but bad things to say about it – and how these opinions are limiting the progress of children like Solly. We’ve been told that SPML is not effective and will not be recommended due to limited research on its effectiveness. We’ve also been told that the doctors who perform it have a history of performing unnecessary surgeries and are “only in it for the money.” (For the record, this latter opinion is not reflective of our experience AT ALL. We’d actually scheduled a more invasive hip surgery for Solly with Dr. Nuzzo based on a virtual consultation, but doing SPML alone was enough to secure Solly’s hips at the time, so Dr. Nuzzo opted to not do the more invasive and expensive surgery.) We’ve been told that baclofen and Botox injections are the only route to go, and that hip and other very invasive surgeries are inevitable for all children with cerebral palsy.

It’s conversations like these that frustrate the heck out of me. Not because they affect our decision-making process and Solly’s progress (they don’t!), but because having a narrow-minded outlook like this can limit outcomes for other children with cerebral palsy. I find that many doctors find one thing that have worked for some children and stick to that prescription for all children with the same diagnosis. I also find that many doctors count on the very grim prognosis given to children like Sol.

I look at it this way: When a child breaks a bone, there is generally one way to deal with it – the bone is set and casted until it heals. However, when a child has a brain injury, there are a multitude of ways to rehabilitate the child, despite what many parents are led to believe. The brain is a unique organ and every child with a brain injury has a unique set of disabilities. The typical rehabilitative prescription and outlook given to children with cerebral palsy has remained unchanged for a number of years despite some really amazing developments in medical procedures and therapies. It is my hope that doctors and research institutions begin paying more attention to medical procedures and therapies that parents are finding successful and start researching these avenues as a means to provide opportunities for children with cerebral palsy.

One thing’s for certain: I will keep talking about what we find successful in hopes that we can positively impact the lives of other children with cerebral palsy.