Appearing on NPR's All Things Considered Podcast

22 September, 2022

So, I appeared on NPR.org, NPR's All Things Considered, and KHN.org, sharing Sterling's story, and talking about her medical bills.

Not being the best public speaker, especially with such a huge audience, I wanted to be succinct in my answers, but you know how that goes.

As a bag of nerves, I asked them to let me know, roughly, what questions I would get asked beforehand, and these were my notes.

First Kingsley, we're so sorry for your loss - can you tell us about your daughter?

Until at 3 months old, exome genetic testing revealed Sterling had Kabuki syndrome
a rare genetic disorder that can affect all aspects of an individual's body, including developmental delays, intellectual disabilities and defects to one or many organs, and in Sterling’s case, it was many
Kabuki syndrome came with a lot of other qualities that made her battle with HLHS even more difficult. It also changed the projection of our lives as a family, as Kabuki syndrome can come with mild-to-moderate intellectual disabilities, autistic-like behaviours, and with her complex medical history
Sterling would have needed us to make her decisions
and would likely have never been able to live un-assisted

And tell us what happened the day after she died?

She lived to be 8 months old, she spent 7 months in the ICU
Through 5 ICU admissions, she had 10 procedures, including 4 major heart surgeries
Her last ICU admission was more serious, she was sicker
We had just got into her ICU room in the morning, said hello to her, gave her a kiss, and she went into cardiac arrest in front of us not long afterwards
Nurses and doctors were able to resuscitate her, but we knew this was her way of telling us she was ready
My wife and I spent the night with Sterling in bed, and we decided to turn off life support the following day
We arrived home after packing up our belongings and saying a final goodbye to Sterling
We had received a lot of mail while we were away, a lot of medical bills,
the first letter we just happened to open was a bill from a debt collection agency for the amount of $26
I think I cried when I opened it
what a lasting memory of our first few moments home without our daughter
Especially considering Sterling’s medical costs were in the millions of dollars
A bill from a debt collections agency for a bill we never even received, just straight to collections
and we ended up going to collections 2 more times after that

Kingsley - what happened, were you able to take care of bills?

Yes, everything sorted itself out
I pay for the best health insurance my company offers, with the lowest out of pocket costs
The 2.6 million dollar bill we received for not getting pre-approval for Sterling’s first 5 months in the ICU was a mistake
The hospital calling us to tell us we owed 11 thousand dollars was a mistake
I was able to pay all the bills, including collections
But my daughter died, so the bills stopped
She was denied Medicaid
If she was still here, the bills would still be piling up
The only reason we got through it, was thanks to the support of friends, family, and strangers, via GoFundMe
Wife was not working
We only experienced 8 months of hospital life and bills, but other families go through these same situations, for years, and entire lifetime
It’s weird to feel lucky, in such an unlucky situation
we escaped financial ruin, and I know a lot of families aren’t that lucky

And I hear you’ve had a bit of good news since then?

After the wildest ride we had
We just wanted a quiet, boring life, with no more surprises
But Sterling had one more for us,
3 months after losing her, my wife found out she was pregnant
We welcomed Sterling’s little brother to the world in April,
and he’s been such a joy for us
He’s babbling, trying new foods, and wiggling places, stuff that Sterling was never able to do
She’s definitely his little guardian angel, as he really is a golden little boy
We also created a non-profit to help children and families like ours
Host blood drives,
Self care packages to patients in ICU, pay a mortgage or rent payment
Basically anything that makes a family’s day in the ICU a little less blue