Preventable Tornado

Jaundice. It’s a word most parents are familiar with, but to my group…it sends chills down our spine.

We don’t joke about cute yellow babies, or pumpkins that are orange.

For us, jaundice was the strange weather that heralded a MASSIVE TORNADO in an innocent child’s newborn body, just days after coming home from the hospital.

Go ahead. Call me dramatic, but with a deeper understanding, you might agree. (AP Photo)

There has been wreckage.

My boy had multiple risk factors for more serious jaundice (hyperbilirubiemia).

Over 12 times, I asked doctors and nurses about his bruising, his early birth, his color and EVERY single time – they dismissed my concerns…this was on the phone, and face to face, and even in the ER when he lay dying in my arms at 9 days old.

The kid with the cut finger was rushed back while we waited hours.

The finger healed.

My son has an irreversible, virtually untreatable condition that has impaired his ability on a profound level to talk, walk, sit, stand, eat, use a toilet, hear, see, form enamel on his baby teeth, control his own movements, digest food, etc.

What jaundice did to my boy – it’s no small thing.  IT WAS A TORNADO.

Kernicterus

I had no idea.

None.

It was treated like a common cold.

They say it’s rare, and to some degree it is.  I don’t see 50 kids a day with it.  But to what degree is it rare?

NO ONE KNOWS.

NO ONE IS TRACKING KI.  There is no mandatory reporting of KI or higher bilirubin levels.

I’ve lived through this – I’ve seen the tremendous amount of negative pressure – pressure to smother the word – kernicterus.

Here’s why: IT’S PREVENTABLE.

You follow these steps, you use the technology and KI is avoidable.  But some people think it’s a fairy tale – that if it doesn’t happen to every baby that it can’t happen to any baby.

It CAN.

It does.

PICK, continues to receive new members on a weekly basis, around the globe, and right here in the US.

We believe that our members are the tip of the iceberg.  Why?

  1. Our group has an unusually high # of educated middle to upper class families.
  • KI DOESN’T DISCRIMINATE.
  • THESE FAMILIES HAPPEN TO FIND US BECAUSE THEY HAVE THE RESOURCES OR THE KIND DOC IN THEIR PATH TO FIND US.
  • NOT EVERYONE HAS THESE RESOURCES.
  1. The negative pressure in the medical community – the pressure to not “throw someone under the bus” by saying the word kernicterus is strong – and it prevents many children from getting the proper diagnosis.
  2. The milder kids are missing.  KI is a spectrum.  There are the more severe and those less affected.
  • IN CASES LIKE MY SON’S IT’S HARD TO KEEP A LID ON THE FACT THAT A BILIRUBIN OF 45.6 IS SURE TO CAUSE A BRAIN INJURY.
  • BUT WHAT OF THE OTHER CASES, WHERE JAUNDICE DIDN’T GET TO 45.6 BUT IT WAS HIGH AND/OR IT WENT ON FOR WEEKS?
  • WHAT IF YOU TAKE MY SON’S CONDITIONS AND THINK OF THE MILDER FORMS: THE HEARING LOSS THAT REQUIRES A SPECIALIZED MEASUREMENT OF BRAIN WAVES TO DETECT – THAT CAN OFTEN APPEAR LIKE A LEARNING DISABILITY, THE MOVEMENT DISORDER THAT IN MILDER FORMS CAN LOOK LIKE A LACK OF COORDINATION?
  • WHERE ARE THESE KIDS?  THEY ARE OUT THERE, BUT THEY RARELY MAKE IT TO OUR GROUP, BECAUSE IT’S MORE DIFFICULT FOR THE FAMILIES TO PUT THE PIECES TOGETHER.
  1. And then there is the sad reality: that there is no tracking of kernicterus because there are no real numbers on kernicterus.
  • WE’VE SPENT TIME PLEADING WITH AGENCIES TO GET OUT OF THIS UGLY CYCLE, AND THEY’VE RAISED TIED HANDS.  THESE HAVE BEEN HARD BLOWS.

So while estimates (derived from looking at Canada’s KI reports) come in at a minimum of 100 NEW cases of KI per year, keep in mind – these are kids that are actually at a level where they would receive the KI diagnosis.  How many more of the milder cases are happening? How many of them are being displaced under other diagnoses? ADHD? Autism? Developmental Delay?  We need the research to know

When a tornado comes, how do you put a price tag on the damage, on

Lives lost?

Homes lost?

Futures robbed?

Livelihoods destroyed?

Siblings scared?

The grief that carries from one day to the next?

A community altered?

What is the price on that?

How much more is the emotional price tag when the likelihood was foreseen?

tornado3.1

(Photo: Associated Press/Mike Gullett)

THE DAMAGE IS 100% AVOIDABLE.

WHAT IF THE AUTHORITIES DECIDED THEY DIDN’T WANT TO SOUND A SIREN?

Many fear the effects of fear, but when you can stop the object of your fear: What is to fear?

And here is the kicker. The cost of the test is minuscule.

You can never measure the catastrophic effects it has upon the families and the ripple effects upon the communities.  They are egregious!  But what you can measure – the healthcare cost? My son’s life care plan is

60 MILLION DOLLARS.

…All because someone did not perform the appropriate test (estimated to cost ONE dollar).

…because they thought their eyes could see the severity of his jaundice.

KI is a tornado…and it’s being allowed to go on with no siren.  No warning came for us.  If we had been told of the possible catastrophe, we would have sought shelter – it wasn’t a rain storm to watch on the porch.  It came in the night and forever took my son’s abilities.

AND THE MATH.

Let’s say that 100 kids a year in US develop KI.  Let’s say each of these cases has an economic impact of 30 million per child (1/2 the estimated cost to my son).

30 million dollars x 100 = a cost to the health care system of 3 BILLION DOLLARS or unnecessary cost, and of course this cost would be over the child’s lifetime, but you also need to realize that it happens EVERY year.

I’m not saying I know the cost of KI in terms of being able to hand you a number. Like I said, there is not positive pressure, or even a system to report it, but on the ground I can tell you – it falls under the tornado category. Although it doesn’t happen to every jaundiced baby, when it does, the cost is catastrophic beyond words.

What of these children’s futures?

What of the crippling effect it has on their entire family and network of friends who help shoulder their burdens,

What of the parents who struggle with depression and decreased ability to work through multiple hospitalizations of their child and the agony of their daily lives?
From the wreckage, I cry out to you: sound the siren!  It is only when the victims make the disaster known that change can come, and I tell you:

Please help us!

Please treat jaundice seriously.
Please spread the word that Jaundice CAN do THAT…
and IT DOESN’T HAVE TO.

Let’s turn the tide around.

Let’s minimize exposure.

Let’s prevent KI by bringing much needed awareness.

Let’s research KI to find the means of treating it.

Let’s pave the way to a cure.

LET’S BRING THE DAY THAT WILL #STOPKI!

3 thoughts on “Preventable Tornado

  1. Pingback: In the Shadows | pic-K

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