What it’s like to have SDR surgery: Scarlet’s story

Scarlet is 9 years old. When she was 7, she underwent selective dorsal rhizotomy (SDR), a procedure in which a surgeon cuts certain nerves that may contribute to leg spasticity related to cerebral palsy. We talked with Scarlet and her parents, Darcie and Tyler, about their experience in the Cerebral Palsy and Spasticity Center at Boston Children’s Hospital.

What was your life like before you had SDR?

Scarlet: I’m a really good swimmer, so I liked to swim a lot. But I also had to wear braces on my legs to help me walk.

Darcie: That’s right. You wore your AFO [ankle foot orthosis] braces. She used to wear them with cute leg warmers and tutus. It was a staple she really rocked. Scarlet’s previous doctor asked us about SDR back when Scarlet was about 4 years old, but we weren’t ready. We weren’t sure if it was something that was right for her.

What changed your mind?

Darcie: In 2018, Scarlet’s doctor, Dr. Benjamin Shore, and his team mentioned SDR again. We thought about it more and learned that Boston Children’s actually has a meeting devoted to SDR, where all the clinicians vote on whether a child is eligible. We had been on the fence and were surprised to learn that most families request SDR and get turned down because it isn’t the best option for their child.

Tyler: It also helped that Scarlet’s physiatrist, Dr. David Fogelman, voted to recommend SDR. He had previously wanted us to wait. That meant a lot to us — we really respect his opinion and it was like a family member telling us it was the right decision.We were thrilled when we got the green light for SDR.

What was it like when you realized you would be having surgery?

Scarlet: I wasn’t really sure I wanted to have surgery at first. I was scared because they would have to cut my back open, and I was worried about having a scar.

Darcie: We worried a bit about the permanency of SDR — when they cut the nerves, there’s no going back. We were also in the process of moving and knew that Scarlet would have to lose part of her summer to recover so she didn’t miss school. But when we met her surgeon, Dr. Scellig Stone, we knew she would be in good hands. He was so calming and confident, without being arrogant.

Tyler: Even though we knew this was the right choice, it was still a scary decision to make as a parent. The team reassured us that Scarlet would see some improvement from surgery, which helped us put our fears aside and focus on the positive.

How was the recovery?

Darcie: Scarlet couldn’t sit up for the first three days after surgery, which was hard. When she was ready, she worked really hard in physical therapy. We even made sure she could keep swimming before she left Spaulding Rehabilitation Hospital, where she had PT.

Scarlet: It hurt after surgery, but I didn’t mind staying in the hospital. I had Popsicles and a TV, and got to go up on the roof garden.

What’s your life like now?

Scarlet: I don’t need my AFO braces anymore and can wear whatever fun shoes I want. I do still wear my SMO [supramalleolar orthosis] braces to school and when I’m exercising.

I can also run faster with my friends, cross my legs, and dance. I love dancing to Taylor Swift, even though Dr. Fogelman says Prince is a better singer. I’m in third grade now and can move around school easier. I also love unicorns and have a new baby bunny.

What do you want other families to know?

Scarlet: I wish I had known how much better things would be after surgery. It was scary, but I’m glad I did it because I can do more things now. No regrets.

Darcie: SDR isn’t right for everyone, and it’s a big thing to ask of kids. It was daunting, but for Scarlet, it was worth it. She has so many life choices ahead of her now.

Learn more about the Cerebral Palsy and Spasticity Center.