The Fight of My Life
There is this inconvenient truth…
– it’s NOT ALWAYS BENIGN.
It’s called KI or Kernicterus.
KI is PREVENTABLE
In short, Kernicterus (KI) is a scary word – Terrorizing.
My son was about as clear-cut as they come.
- 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%.
Jaundice does not always hurt babies, BUT IT CAN.
- Testing of bilirubin levels,
- Use of the NOMOGRAM (and these guidelines for preemies),
- coupled with treatment, when indicated
– these things CAN and DO save kids from a lifetime of disability.
- 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.)
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.
- 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.
- 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).
- 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.
- 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.
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!
What to know more about KI…of follow my floundering efforts as PICK’s social media coordinator?
Need more info on jaundice for new parents?
(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.)