Written by Justin
(A Creative Writing English Assignment)
Justin talks to his mom about having deep brain stimulation (DBS) surgery, kind of like a pacemaker that can send electric charges in the brain. 15-year old Justin has kernicterus, which is brain damage caused by severe newborn jaundice. He has athetoid cerebral palsy, which means his muscles move uncontrollably. He uses a power wheelchair to move around. His mom understands his voice, but others sometimes don’t, so he also uses a communication device.
Justin: Mom, I have something to tell you. [waits for mom to stop doing the dishes and come and sit down by him at the kitchen table.]
Justin: I have been thinking about doing DBS. I know that at first after we met with the doctors, I didn’t want to do it.
Mom: Right. You said that you were fine just as you are.
Justin: Now, I want to do it.
Mom: What made you change your mind? [concerned]
Justin: I’m feeling frustrated when my muscles are acting as if they have their own brains. Everything is just too hard. I tried all the medications and none of them have worked for me.
Mom: I know it’s hard. You said last week that you’re fine with how you are. So, what are you fine with about how you are?
Justin: I’m happy. I have fun watching sports and love school.
Mom: Do you think DBS will make those things harder or easier?
Justin: I think it’ll make things easier.
Mom: Do you remember what the doctors said about what’s all involved with DBS?
Justin: Lots and lots of therapy
Mom: That’s one. Can you name another one?
Justin: There are risks like any other surgery. Benefits are unknown but might calm my movement and make it easier.
Mom: I want you to have an easier life so the possibility of getting better control over your muscles seems pretty cool. Do you remember what the doctors said about how they do DBS?
Justin: I know there are two surgeries. The first lasts six to eight hours. I’d be in the hospital for one or two nights and it would be where they put the electrodes in my brain by the basal ganglia.
Mom: That’s right. And you’d probably be home from school for around a week to recover.
Justin: A couple of weeks later, I’d have the second surgery. It takes less time and is when they put the stimulator in my chest and hook it to the wires in my brain. I’d be in the hospital for a night or two and then home for a week.
Mom: Then, do you remember what happens after that?
Justin: I’d go in to get it turned on and then have to go every month for about a year to figure out the right amount of stimulation. That’s when I’d be doing lots and lots of therapy.
Mom: So, you know what happens. You know the risks and that the benefits are kind of unknown. You also know a girl with kernicterus who has had DBS and your movement disorder team did DBS with a young man with kernicterus this past year. One thing they mentioned was that if you did DBS now, it would probably be more effective than if you waited until you were older. Did you remember that?
Justin: Yeah. DBS hasn’t been done on many kids with kernicterus.
Mom: Only a handful. And it’s not a cure. You met Lexi and she’s better than she was without DBS, but she still has a lot of challenges.
Justin: Lexi is pretty young, so maybe she’ll keep on doing better as she gets older.
Mom: It’d be nice to be able to see in the future and be able to compare your life with or without DBS. Unfortunately, we don’t get to do that, though. We just have to make a choice based on the best information we have and live with it. It’s not an easy yes or no answer and it’s all kind of scary.
Justin: Like a baseball game scary
Justin: Tie game, last inning, 2 outs, one man on third, 3 balls, 2 strikes. DBS can be like my RBI. It’s life baseball. It’s my hope for winning the game and knocking kernicterus on its butt!
Mom: So, you’re going to do it?
Justin: Yeah. Let’s do it and see if we can get a homerun but be happy with a base hit.
This is a pictorial view of Lexi’s journey with DBS
8 thoughts on “Justin’s Decision: Deep Brain Stimulation”
Reblogged this on My Rearranged Life and commented:
A thought provoking look at Deep Brain stimulation in the eyes of a 15-year-old with Kernicterus. (Also, please check out the new site http://www.stopKI.org !) – Miriam
Hello My daughter is 19 and she has athetoid CP. We have started to do research into advancements for CP and came upon DBS. I am very interested in your experience. The choreoathetoid movement in her arms are especially very troublesome for her. I would love to hear from you 🙂
Hi Karen, we just confirmed the surgery dates yesteray. He’ll be having the stage 1 surgery in early April and stage 2 surgery in early May. We’ll make sure to post how he’s doing.
That is great Kris! We have since learned that Lauren’s movement is dystonia associated with cerebral palsy. She is having a 3T MRI in April as well as meeting with Dr Honeycutt and Dr Warren Marks at Cooks Children’s Hospital here in Texas. They are talking about surgery in May
Justin, I love how you captured your journey in making this decision in a dialogue piece with your Mom. I also love your baseball metaphors. I will so look forward to hearing your journey through the two surgeries and tons o’ therapy!
Justin, you are the best. Thank you for posting this. Your story can help not just you, as you make this decision, but other people too. I am your fan!
Justin, I am so impressed with your mature way you are looking at all this. You explain this so well, even I can understand, now what it is. Even though you told us a little bit about kernicterus, I couldn’t always hear everything in the noisy bus. I think it is awesome that you are relating it to a baseball game. You know I love baseball too. I believe you will hit that homerun. But even if it is only a base hit, you will still be awesome!
So happy for you.
Say hi to Mom and Dad and Nathan.
olá pessoal sou do brasil e vi está historia que me emocionou muito ,estou aqui agora me perguntando como eu faco para poder fazer esta cirurgia em meu filho porque ele tem kernicterus e tem 13 anos e os medicos aqui nao levam a serio ele trata como se fosse um paralisia cerebral maes que estao lendo minha postagem poderiam me ajudar a saber mais sobre DBS e como é esse hospital no kansas city .estou desesperada este é meu email :email@example.com
me ajudem uma mae desesperada PATRICIA DE OLIVEIRA