This is day 13 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Miriam from A Rearranged Life is sharing her story about her son’s very preventable, yet very permanent, disability.
I’m not sure if she could see me shaking, the mom with the new yellow babe. Whether she could see my terror, my inner battle, I had to be brave. I had to put self aside. I HAD to ask.
“Has your baby’s bilirubin level been tested?”
I wish I could tell you it went well. It didn’t. She was nearly shaking herself – sleeplessness and hormones rushing into one defensive mix. It must have seemed that I was visibly discriminating against her child – labeling her baby as having something wrong. I don’t know. Our own stories loomed too large.
The truth is I should have at least told her congratulations, or that her babe was beautiful first.
The truth is that I wasn’t saying anything was wrong, I opened my mouth to try to prevent the thing.
I can’t unhinge my jaw to tell it without my soul and my own tragedy unfurling alongside my words.
My husband had just arrived home from weeks working abroad. I’d just given birth to my first child. We’d had that week at home reveling in the new life, the sleepless fog, and our own reunion.
It was too good, a bubble that would burst.
A saturday at home turned into a terrifying ER visit. The curtains didn’t contain the whispers. “Brain damage.”
No one in the ER had paid much attention to my boy for hours, and then a number. 45.6. That number lit up the whole place, all feet scurrying to him, all eyes on him. I saw fear and anger on their faces. There was no bracing myself for this. Where was that donut cushion? I had just given birth… to a healthy boy. I had just had a healthy pregnancy. All was well. was.
The journey from “is” to “was,” there is no telling how long it is.
He’s 9-years old now. Sometimes people ask, sometimes I just tell.
It happened where?
Here in the USA?
Jaundice can do that?!?!
and it did. Jaundice did the thing. It put my boy in a wheelchair.
[Tweet “”Jaundice put my boy in a wheelchair.” via @arearrangedlife”]
No, they didn’t roll my 7 pound baby out of the hospital in a wheelchair
…but they might as well have.
The cochlear implant, the feeding tube, the life chock full of therapies, nursing… they were yet to be seen, but the damage that caused them was done.
We had been home with our healthy boy one moment. As saturday turned to sunday, in the wee hours of the morning, we had a neonatologist telling us he might never be able to hold a pencil, speak, sit, walk, hear, and much more. The good news: this would not affect his intellect. My boy would likely be bright, trapped in a body that would be at war with him, his muscles living in rebellion to his mind – in constant motion.
After birth, we’d had been sent home from the hospital healthy. We had taken him back to the pediatrician twice. At every turn we’d been told that he was healthy, that we were doing a good job, not to worry about the bruise, not to worry about his color.
But what I didn’t know…
it nearly killed my boy.
It left a stain…a yellow stain.
and the clincher is this – it was preventable.
At high enough levels, that yellow stuff in the blood, the bilirubin literally stains the brain in almost the same spot as Parkinson’s, causing cerebral palsy (athetoid), and dystonia – movement disorders that mean he can’t stop moving…not even in his sleep, auditory neuropathy spectrum disorder, dental enamel dysplasia, impaired digestion and so much more. (He was not screened for risk factors, tested or treated as he should have been. My boy’s bilirubin level was allowed to rise to 45.6, unchecked.)
And jaundice…it can do that. Jaundice did that, and this family of 5 lives the reality of what jaundice can do, what jaundice did.
We walk alongside other families too…families that can also give testimony to what jaundice did. Kernicterus is a spectrum. Some of those affected walk. They talk. Some don’t. Many have something in between, communication that’s hard to understand as muscles of the mouth war with one another. This yellow stain can be more mild. (The form of hearing loss that comes with KI is in the brain, not the ear, so it is only found with more elaborate testing of the brain’s response to sound.)
Did you hear that?
This is hearing loss that’s not in the ear…that can go undetected for years, for a lifetime…and it can come with behavioral issues, or clumsiness from mild CP.
Do you hear this?! How many kids are misdiagnosed under other broad umbrellas?
No one knows.
A diagnosis of kernicterus often points to a potential malpractice lawsuit. Does this present an ethical concern?
This is preventable. A simple test, screening, and special lights (phototherapy) can stop the whole thing. But when these steps aren’t taken serious jaundice can be missed. No one knows how much it’s missed. I’ve served for years on the board of pic-K (www.pic-K.org). I’ve spoken for hours with the CDC, with the experts, and I tell you…
No one is tracking the condition in the USA. Sadly, pic-K receives several new members every week, and these are of the few that have the resources to get diagnosed.
A diagnosis of kernicterus often points to a potential malpractice lawsuit. An ethical concern? What if a doc isn’t sure, doesn’t want to stir up trouble?
Is this perhaps why there is so little parent education? When I went back and asked the nurses why they didn’t tell me how dangerous jaundice could be: they “didn’t want to scare me.”
I wish they had. I can testing first hand that KI is far more scary than prevention, education. How many parents have no idea why their kid was readmitted for jaundice?
Want to join us, want to spread the word that #jaundicecandothat? Read more. Do more. Check out our organization www.pic-K.org
As for my boy, as for our family, this isn’t nearly all of the story. This. This is where I loose my power over words. This is where my boy had a room full of teachers on the verge of tears as he fist bumped and smiled and talked with another special needs child. This is where I watch the 70 lb dog climb onto my boys lap in his chair, where I watch his sisters and he laugh together, where I watch my husband strapping my boy to a zip-line.
Kernicterus certainly burst a bubble that day…it certainly laid down picket fences. But perhaps the picket fences weren’t the best. Some days I still wish for them. But on others I remember that we are building something else. We are drawing back the curtain and illuminating a better place.
I was wrapped in those fences. I was invested in that paint, that brittle wood. As I put away those neatly rowed expectations, I put away myself…and it hurts. I throw away my fences, and I lean onto, I rest on something far better than the small confines of self.
I cannot go back.
This cannot be undone.
Prolonged grief will not help my family.
I do not, I can not live in what WAS.
I live in what IS.
I want to die knowing that I fully enjoyed the gift that my son is, that my family is, and all of God’s “good and perfect gifts.” I want to go out knowing that I used my own experience to ask, albeit shaking, “Has your baby been tested?”
Witnesses have confirmed: her life is a running watercolor, bright, flowing, headed you-never-know-where. Miriam, her free spirited girls, her mowhawk-headed boy in the chair, her hunk of a husband, and their large “service puppy” have recently found there way to Kansas from the East Coast. The boxes might not be unpacked yet, but their paints are out. The mess and the trials just might strain them to the end of themselves and bring a rearranged life far richer to the complacent one of their daydreams.
Miriam shares the art of this rearranged life over at www.arearrangedlife.com