Miriam Advocacy, Partnership, Prevention, Research - Rescue, The K word

In the Shadows

rescue

They are in the shadows.

Babes are at risk.  (Jaundice can become toxic when not managed properly.)  Children live with no viable treatment options.  Research funds are needed.  Adults live in immense difficulty.  Families struggle to hold together fractured pieces of their lives.

…all because of jaundice.

There are those shaped by “the K word” and those who are threatened by it.

They live in the shadows.  Many babes are affected by jaundice, but not all escape it unscathed.  Here in the US, there is no reporting system for kernicterus.  Due to the negligent nature of the diagnosis and the ethical concerns that accompany it, it is not always diagnosed either.  How many are living with kernicterus and do not know it?  The effects of kernicterus take months and years to become apparent.  (Newborns don’t need wheelchairs.  They aren’t expected to walk or talk.  The movement disorders, sleep disorders, hearing loss, vision loss etc all become apparent as children miss milestones.  Without proper analysis, the k word is easily swept under the rug, misunderstood, mislabeled.

And what of those living with the milder effects?  Neurological hearing loss (that can only be discovered under sedation with a test that measures brain wave response to sound.)  How often is this misread as behavioral – smart children with unpredictable hearing and difficulty communicating?  Milder forms of kernicterus also seems to come with hyperactivity – how often is that mistaken for other disorders?

The truth is that the numbers of kernicterus are hidden in the shadows.

Our kids, those in picK are likely the tip of the iceberg, and our numbers grow weekly.  And the truth is – one case of kernicterus is one case too many.  The effects are just too catastrophic!

How do we rescue?  How do we make the change?  How do we illuminate?

How do we?

  1. On the front end, we turn the light on!  We spread the word – jaundice can do that, and it doesn’t have to!  TEST!  Prevention.
  2. For those living with the K word, we support the research that will lessen the load of that K.  Research for viable diagnostic tools and treatment options that can lessen the effects of the K…diminishing it’s effects.  Rescue.

Please partner with us in shining the light needed into these shadows to rescue those living with the K!

PICK Research - Rescue, The K word

Justin’s Decision: Deep Brain Stimulation

DBS

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

Mom: Explain?

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