Video Transcript

Playing ball is a good time for four-year-old twins Barrett and Elliot and their big brother Braxton. But life hasn't always been an easy game for the twins. Born premature, they were hospitalized with complications after weighing only several pounds. Then the two were diagnosed with hemophilia-a, a rare bleeding disorder in which the blood does not clot properly.

In addition, Barrett has a condition called spastic diplegia, a form of cerebral palsy, which causes tightness and stiffness in his legs, making mobility difficult. Two years of weekly visits to Cincinnati Children's for physical therapy helped, but it wasn't enough.

Lindsey Long, Barrett's Mom: Due to this level of spasticity, the loop in his legs, we finally reached out and said, what else? What else can we try because we're just hitting kind of a, a wall for progress. And he's doing great, and we're glad he's where he is. But there has to be something else we can try.

Charles Stevenson, MD, pediatric neurosurgeon: For many children, just like Barrett, a surgery known as selective dorsal rhizotomy, or SDR, can be quite helpful. 

Lindsey Long: So basically what they do during the procedure, they're able to cut and sever the nerve rootlets to their legs that cause that level of spasticity.

Charles Stevenson, MD: As soon as we're done, as soon as the child wakes up, the spasticity in their legs is significantly reduced. The effect is instant.

Barrett had his procedure when he was two and a half years old, and the results were life changing. 

Lindsey Long: On the fourth day, he sat crisscross applesauce for the first time. And we just kind of looked at each other like oh my gosh, like his legs have never bent that way before, and he did it with such pride and a smile on his face. 

David Long, Barrett's Dad: Just from the research on it, we looked at kids that have had it, we couldn't find a lot of negative reactions to it. The only drawback was time.

Charles Stevenson, MD: Performing the surgery is the easy part. It's done in a few hours; that will go well. However, to get the most benefit, they're going to need to participate in therapy multiple times each week. And so that is a huge commitment from family.

Paola "Lala" Mendoza-Sengco, MDpediatric physical medicine and rehabilitation specialist: So after a rhizotomy, the spasticity in the legs has been completely eliminated. And we're left with unmasked weakness of the legs. And so we have to relearn how to walk, how to program our movements, and how to plan these movements.

Although it was hard to see progress at times, Barrett worked hard in physical therapy for the 12 months after surgery. 

David Long: He doesn't give up. He goes out with a smile. And not that he's ready for therapy everyday, you know; there's some days or failures. They're just naturally going to be.

Paola "Lala" Mendoza-Sengco, MD: The burnout feeling could be real. But we want you to push through those feelings and feel motivated to continue to push on to really get to your ultimate goal and to have the best outcome as possible.

Barrett will continue to be followed by the Pediatric Rehabilitation Department and Hematology at Cincinnati Children's for life. But with hard work, his future looks bright. 

Lindsey Long: We've taken a lot of what we've learned, and we're implementing a lot of that at home. But now the choice is kind of on us of what we want to focus on. So setting our big goals--and his big goal is to get him to walk up the steps to get on a bus to go to kindergarten.

Charles Stevenson, MD: Like most kids his age, he just wants to move. If we can just reduce that impediment to their movement--that abnormally high tone in their legs--then they do the rest. They know how to do the rest.