The Fight of My Life

Beyond pushing the wheelchair, learning from the boy with the brokenness, playing wife, working out a very misguided laundry system, banging on this keyboard for some free therapy, and raising some free-spirited preschoolers, there is something else…another hat I wear.
Today, world’s collide.
And of course, I’ll take my time telling you how…just remember this is my personal account. This blog is in no way representing any organization, and I have no medical training. It’s just here for some of that free therapy…and discuss how I try to manage to cut the cake I’ve been dealt, with my own faith, in my own family.
And before I start – Happy New Year, Merry Christmas etc! (and the picture…you’ll understand it better in a minute!)
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My mother-in-law-full-of-grace, was carefully slicing the cake. Eight cousins were trying their best to be patient. There were demands. Pleas toppled over one another. “Pink icing!”, “No icing!” I want THAT one!” “I want a ring!” “I want the penguin!” They couldn’t bear the torturous wait. Mother-in-law-full-of-grace, she looked a little overwhelmed.
Me? I did – what I do.
This looks something like rushing in to help OR barging in and taking over.
I’m not sure which.
I jumped in and hastily served out one awkward crumbly piece after another.
You see, I’m not the kind of person to dot my i’s and cross my t’s.
If it’s between doing a hasty mess of a job or not doing it – I’m forever the hasty mess.
The countless typos and bad grammar, they might be your first clue.
(I am by no means saying that getting the details right doesn’t matter. It often does, much more than I’d like to admit, and I really appreciate the people who make things run more smoothly. We all have our function.)
My messiness, my juggling…it has far-reaching consequences.
I mean it.
I mean it because I just missed a BIG deadline and am a bit shattered.
Yesterday I missed a smaller one.
I have no plans for 2 upcoming birthdays that are days away etc.
I find past due parent/child projects on the floor of my van all the time.
I’m known as the super late mom at my daughters’ school…this morning because I was trying to tweet a mom worried about her baby’s jaundice in the UK.
Hubbs says I put saving the world above our family.
Truth is, I try to juggle both…and I do try to put family first.
I regularly drop the pins.
But what else can I do?
“Horton Hears a Who” is forever on my mind.

There is this inconvenient truth…

this truth out there that…

jaundice…

you know – that benign yellowing condition that affects 1/2 the newborns out there?

– it’s NOT ALWAYS BENIGN.

Although at lower levels it’s actually good for them…at higher levels it can kill, or badly cripple newborns…for life.
Newborn jaundice can leave children with a lifetime of severe physical disability that makes speech, walking, talking, eating, hearing, sitting, holding an object and many other basic life skills impossible or nearly so.

It’s called KI or Kernicterus.

It’s the word that FOREVER changed my life. And what makes it inconvenient? These things make it horribly inconvenient:

KI is PREVENTABLE

KI is not tracked.
KI rarely diagnosed correctly
KI can lead to litigation.
Many physicians would like to wish it away.
I would like to wish it away.

In short, Kernicterus (KI) is a scary word – Terrorizing.

When KI happens, families are often left in the dark.
There are a few that spend hours researching it, connecting the long list of secondary diagnosis’ and pushing for the truth.
There are some tender-hearted physicians that make sure you hear the word, they speak it in frustration or they whisper it.
One was good enough to tell us about PICK.
We were of this fortunate few…fortunate enough to hear those hard and heavy words early.
Some physicians that treated our son tried to sweep it away….said it couldn’t be.
They even removed it from the second draft of the medical records.

My son was about as clear-cut as they come.

There was the uneventful natural birth.
There were the good apgars.
Feeds went well.
He passed birth weight in first couple days.
He had normal stools…
and there was that big bruise on his head I kept asking about,
and he was 37 weeks (if it hadn’t been just after midnight, he would have been 36)
and then there were the 9 days of health and celebration
and there was the very yellow/orange skin that the doc kept telling me not worry about
and there were those yellow whites of his eyes that were “just from the jaundice”
and THEN there was the refusal to eat
and then there was the projectile vomiting
and then the high-pitched scream with arms flung wide
and there was the advice nurse telling me that all these things are “normal” while I watched my babe’s life ebb away
and there was the rush to the ER
and there was the waiting for triage
and then there was the temp of 96 degrees
and then there were the hours of waiting to be seen
and then there was the BILIRUBIN got to 45.6
and then there was the yellow spinal fluid when they finally got the LP
and then there was the posturing,
and then there was the respiratory failure
and then there was the double exchange (blood transfusion of his entire volume of blood, twice over)
and there were the hours of staring at the car seat, wondering if he’d ever make it home.
and there was the MRI…
and then there was the word – kernicterus
and there was the doctor that did that double exchange manually through the wee hours of the morning – the doc that salvaged our boys life by bravely forging ahead and doing the exchange without the normal equipment. (He ran the central lines through the groin and performed the exchanges with 2 60 cc syringes.)
and there was the God that loves us still and has a plan much bigger than us and this tragedy
and there are years of tears of hurt and tears of joy
and there was/is life.
Back to the point:
Few ever find THAT word – Kernicterus.
Fewer still find our KI foundation – PICK, these are the only ones we know of.
That 45.6, it happened in 2005. I recently sought out an answer to a question I’d pushed in the background:
How families with a new case of KI have joined the ranks of our facebook KI group since 2005?
So far – MORE THAN TWENTY. More than twenty kids robbed of their hearing, movements, speech, ability to sleep and eat correctly by a PREVENTABLE condition…and in the UNITED STATES, no less. And who knows the exponentially higher number they represent? No one.
We with kids in wheelchairs and on crutches with kids that can’t talk and MRI’s that show the focal damage of KI in the globus pallidus (basal ganglia of the brain) clear as day…
  • we have heard physician’s laugh at the idea of KI causing our child’s condition.
  • We’ve seen some shake their heads
  • Some get a very skittish look and say, “it couldn’t be kernicterus” (despite the fact that it’s on the chart – clear as day…and all the symptoms – right in front of their eyes).
  • I promise you…KI is a very inconvenient reality.
  • It’s classified as a non-event.
  • Baby books usually have a mysterious way of describing it that leaves you scratching your head and assuming it only happens in developing countries…or never.
  • Most believe that it was eradicated when they developed drugs to help with problems related to blood incompatibility. Not true.
  • A lax attitude toward jaundice and the risk factors that can lead to kernicterus – it’s a perfect recipe to let a child slip through the cracks. It’s how KI happens.
  • My concerns about my son’s jaundice were dismissed more than 10 times in his first week by the doctor and nurses.
    • That was based on visual inspection, AFTER a bili was drawn at 14 on his discharge from our uneventful 2 day stay for his birth.
    • 14 put him ON THE LINE for phototherapy. (Plotted on a nomogram. – something I learned too late)
  • SINCE THEN, at a different hospital, in 2008 and again in 2010 my concerns about my subsequent children were again dismissed.
    • To be fair, the neonatologists that I consulted prior to the girls births were VERY much in favor of testing their bili’s at least twice.
    • BUT the pediatricians and nurses didn’t share that sentiment.
    • They looked at my girls and said that I didn’t need to bother with the test. More visual inspection…and with a family where visual inspection had failed horribly before. They said the girls looked fine. WHO IN THEIR RIGHT MIND WOULD SAY SUCH A THING?
    • My girls were fine, but certainly a little caution was in order.
    • When tested their bilirubin levels did plot them around 75%.
There is a blind eye…and the only way to fix it is to tell the public what I wish I would have known:

Jaundice does not always hurt babies, BUT IT CAN.

– these things CAN and DO save kids from a lifetime of disability.

How many parents know why their jaundiced baby was kept in the hospital or put under lights?
Most complain.
I don’t blame them. They have NO IDEA what was at stake.
Tell them. Tell them to be grateful. Tell their friends to ask for a bili test, and to see where their child plots on the nomogram.
KI does not have to happen.
I’ve heard nurses and doctors claim time and time again that they don’t talk with parents about the risk of KI because they wouldn’t want to scare them. It’s a sentiment that nearly makes me jump out of my chair. In response, I have two thoughts:
  1. I wish, more than ANYTHING, that someone wouldn’t have been too scared to scare me 7 years ago
  • If it’s preventable, how scary is it? It’s a week or 2 or going in for periodic testing (if a child is at risk) and then…the worry is over.

For us, the worry, the fear, they don’t go away.

We face one hurdle after another. (I wrote this on my phone while sitting in the medicaid office (trying for nursing for Blue) for 3 hours…and I didn’t get seen. I’ll try again on my next free day.)

The cost of my son’s healthcare for his lifetime is estimated at is 60 million dollars!!!
The more than 20 new kids, it’s more or less for each of them. If they were all at 60 million, that makes 1.2 BILLION dollars in healthcare costs for those 20 kids.

1.2 BILLION DOLLARS in mistakes….and these aren’t numbers, they are lives…lives that many people in offices far away measure out in numbers.

I’m pretty sure “they haven’t” done all the math.

I’ve heard it said that the bili test costs $1 to run.

Regardless, this is an astronomical problem. Who is to say that there aren’t 10 or 100 or more children out there for every one that gets diagnosed correctly AND manages to find PICK.
The past month has brought laryngitis, the flu, bronchitis, sinusitis, and a bad stomach bug (most of which, all of my kids had too). We also, miraculously were able to travel 2,000 miles to get to family and back.
In all this, keep hearing these stories. Stories that keep breaking the heart – my heart!
  • The new baby that cannot control his body that is deaf and blind in the UK,
  • The celebrity mother in the UK today that had to fight to get a midwife to come out and assess her child’s jaundice,
  • Recollecting my own battle to get my jaundiced girls tested. (After Blue was born. POST KI.)
  • The four-year-old in California that had Down Syndrome and on top of that did not have his jaundice cared for and has severe KI IN ADDITION to Downs.
  • The mom who flew internationally with her 4-year-old with KI. There were hours or trying to calm her girl’s constant wild movements, holding her, consoling. My friend had to struggle with her own hyperventilating, on top of her daughters pain and discomfort.
  • The baby that died in Zimbabwe last week, and they even incorrectly called jaundice “yellow fever”.
  • The 8-year-old in Nigeria that is almost as severe as my own boy and has NEVER had a wheelchair.

Words on a page: Do they seep into your soul? Do they make your heart ache a little? They do for me.

These stories are the reason behind this other hat…being the Social Media Coordinator for PICK. And yes,

I’m overwhelmed: It takes an emotional toll – being in this club.

As an advocate, as a mother, as a wife I’m spread entirely too thin.
There are the endless battles for equipment my son needs,
There is the realization that with 18 million they could find a “cure” for my son – for all kids living with KI,
There is the knowledge of just how badly we need a public awareness campaign
There is the matter of helping less developed countries understand, test, and treat jaundice and the risk factors for it…
There is the fight for the world to be kind to kids that are different.
It all is MUCH too much….much too much to accomplish from my living room.
And what it boils down to is this: who else cares enough to stop it?
The organizations that represent docs who might have slipped up and caused a case of KI? – That might make them the target of litigation. They aren’t out to get us. They just have a conflict of interest that causes them to step aside.
So Who? Horton asks me:
“If not you, then WHO?”
– No one but the very families…
families (like mine) that barely have their heads above the water are submerged, rising for a second here or there to gasp for air.
These are the only ones invested enough in the battle….or with their eyes open enough to the COST…the cost of treating jaundice casually. And of these families, no two look alike. We come from all over the globe, with every different religion, different finances, different jobs…different cups…and not everyone can take the cup that I can and I cannot take the cup that they hold. We all aren’t able to take part in this battle…and those of us that can “Can only manage to do what we can do.”
We, with these faint voices and these hands heavy with KI, we are the few that do and must push to END KI. …to #stopKI
If one in 100 or 1 in 1,000 slip through the cracks, doesn’t it matter? The cost of each case of KI is astronomical…and it weighs heaviest on our families affected by KI.
So, the solution:
  • It looks like me running around the playground while typing an email on my phone, updating twitter
  • It looks like dirty dishes on the sink for much too long.
  • It looks like my kids taking marker to their face on a daily basis.
  • It looks like my youngest changing her own diapers, dressing herself (dresses usually backwards, shoes on the wrong feet).

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…and in a way…this is the way if prefer to live life:
  • not getting my panties in a bunch because my daughters face is messy.
  • Now the not being present at the playground?…I’d rather improve that.
  • My children running wild when they should be quiet?…can’t say I wouldn’t prefer the time to train them better.
  • It looks like a maxed out special needs mom, who already is drinking from a fire hydrant…juggling an extra roll – Social Media Coordinator for PICK (Parents of Infants and Children with Kernicterus)
    • PICK is a volunteer-run small non-profit with big dreams…dreams like putting an end to KI.
THE GOOD PART, (I promise!!)
This is my plan:
I cannot do this. I am not strong enough. I am no super woman and I am no saint. I cannot do this nearly well enough. I can roughly throw out the slices of cookie cake and pray pray pray that God will put the wind in our sails and make my little efforts go much further than they could ever go on their own, as a wife, as a mother, as an advocate.
I need you to understand that although I’ve just typed way too many pages about this battle and the hardship of it all: there are blessings in the trials. There are gifts in the ashes. Namely, when all around you is scorched ground, how can you help but finally see the complex beauty in those tiny remaining remnants of green grass. How can you help but celebrate the huge victories that would have been small, given other circumstances. How much more do first steps mean, when they’ve come with 10 years of therapy – words when they’ve come with effort for every last muscle in the body? These are mountains, and they bring exquisite joy…among the ashes of hardship.
Our preacher man spoke of the need to have a power supply. There is endless potential in a computer that is useless without a charged battery. As for our power supply – He spoke of digging into His word and He used a term: “habitual surrender.” It doesn’t sound great. But I think that phrase that action holds a hidden wealth of joy. In being at the end of myself, in the juggle with pins falling about me constantly – in it all there is a magnificent reality that is higher than myself. As much as I might fool myself into thinking that my problems depend solely on me…they don’t.
This battle is the Lord’s. I cannot end KI on my own. It’s not the strength of the horses or the chariots that win the battle.
Pray with me? Pray that a handful of parents can impact some real change
  • to prevent the preventable,
  • to raise the 18 million to give our kids a “cure” – a cure that could mean learning to talk in a way that’s understandable, holding a pencil, to sit, to walk, and being better able to express the words that lie locked up in their beautiful minds.

-Miriam

And PS – please know: I DO count the positives, even when it comes to KI.

I’m thankful for (and not in this order):

  • The many practitioners that DO treat jaundice seriously!
  • The families that started PICK, who fought tooth and nail to expose this problem! Their tireless efforts are the reason that there are not more cases of KI.
  • For the CDC’s literature that doesn’t beat about the bush
  • The hospitals that screen for risk factors and utilize their nomograms and bilimeters
  • The organizations like d-Rev that are developing low-cost and effective bili lights for developing countries
  • The organizations fighting to reduce prematurity, like March of Dimes and countless others
  • The Dr. Steve Shapiro that has been tirelessly pushing for research to find the cure, as well as looking at causes and treatment options
  • Dr’s Bhutani and Johnson and their relentless work to end KI…including the essential nomogram
  • The many other researchers and doctors around the world that have contributed to the treatment options that make KI preventable…the double exchange, the blood test, the bilimeter and others
  • The drugs like Baclofen, Klonopin, and Prevacid that do a little to ease the problems that come with KI…and the brilliant people who develop them
  • Over a dozen doctors that serve as my son’s specialists
  • The nurses that love on my boy and pay special attention to his needs, past and present…they have greatly increased the quality of life for our entire family!!!
  • The therapists that come to have fun and optimize my son’s potential
  • The blessed curse of medical equipment that keeps us going!
  • The accessible van that we drive
  • The free entertainment and suspense of getting to see the ensembles that my girls wear every day
  • The odd and quirky humor that comes into our home every day
  • Our families, that melt away the miles between us with their love and support
  • Not sweating the little things
  • Little faces painted with their own wild marker designs
  • The house full of positioning equipment
  • The marvel that is the cochlear implant
  • The feeding pump and g-tube that make nutrition that much more possible…more modern miracles
  • The teachers and therapists at school that are VERY dedicated to helping my boy communicate
  • The families of PICK that encourage and swap tips daily…some of my closest friends
  • The 7 inspiring and very talented women that volunteer their time with me on PICK’s board
  • The friends that aren’t afraid of the invisible fence that we live behind
  • The parents that train their kids beautifully to have empathy: to see the child or person beyond the disability.
  • The ability to be a VOICE for my son
  • The many special needs parents that I encounter that make my life brighter and richer in more ways than I can say
  • The church
  • The ability to serve on the board of PICK…to fight for this very worthy cause!
  • This high tide that makes me look to the rock that is higher than I
  • The God that has a bigger plan and uses it all for good.

“Delight yourself in the Lord and He will give you the desires of your heart. He will do this. He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun.” – Psalm 37:5-6

More than anything, my job, as a wife, mother, and woman with a cause is this:

Delight myself in the Lord

…here now, in the present. I want open my eyes to these gifts, and live fully present, right here, right now…in the mess…in the crumbs of what I can manage…and to forge forward knowing that my prayers are heard and that this crazy mission (a
m mission to end something that so many would rather sweep under a rug)…that we just might get somewhere with it!! Crazier things have happened!

Pray

What to know more about KI…of follow my floundering efforts as PICK’s social media coordinator?

facebook twitter youtube pinterest causes PICKonline (to be getting a facelift in the next few months)

PICK LOGO

Need more info on jaundice for new parents?

We partnered with CDC to create these for families with newborns and these for professionals treating infants.

(They are SPOT on…except for the part about MR. Kids with KI are very bright. They do not have MR. That is an old misconception related to their hearing loss, ANSD, that it only diagnosable with a relatively new test called an ABR. ANSD coupled with the visual and motor impairments, make communication VERY difficult, and for some, impossible.)

4 thoughts on “The Fight of My Life

  1. Such a generous soul you are to be willing to share so much with us. Your kids have a rare opportunity to have a mom who is an advocate, an educator and a fighter. They will learn from experience which shoe goes on which foot – we all learn that; but you are giving them something much greater by your example and your ministry – and it is most certainly a ministry.

    Blessings to you, and if you have any ideas on how I could share this information about kernicterus with my readers, give me a shout.

    Blessings,
    Alyson

if you'd like to email, you may do so at arearrangedlife at gmail dot com

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