Sick Kids’ Laugh Riot

Sick Kids’ Laugh Riot

Dear Congressional Democrats: Here’s a funny story about what it’s like to have a really sick kid, even if you do have insurance.


Dear Congressional Democrats,

Hi, how are you guys holding up? It really sucks that you have received so much criticism about the selection of the Frost family of Baltimore as an example of people deserving to benefit from the federal S-CHIP program.

Just thinking about it makes me so mad, it’s enough to give me a heart attack, but that may not be covered in my health plan, so I’ve thought of a way to deflect further criticism. I’d like to offer my family. We really don’t qualify for S-CHIP but did in fact take a few hundred dollars of state money when faced with a medical crisis. When the Republicans hear our story, everyone will take back what they’ve said about the Frosts. And you don’t have to vet us; I’ll tell you all the bad choices I’ve made right up front. I’ll try to keep it light, since this is a humor column, after all.

OK, here’s how it starts. In 1998, our son was born with VACTERL association, which is such an odd constellation of birth defects that our insurance company hadn’t even heard of it. At first they didn’t want to pay our benefits until they could establish it was a real thing. That was a laugh riot!

When our son came home from the NICU, he had to be fed through a gastronomy tube, with his fluids aspirated so he wouldn’t choke on his own saliva. He had a colostomy bag that had to be monitored, and we were totally overwhelmed and underprepared to administer his care. Our private insurance, which we receive through our unions, didn’t cover home healthcare. On top of that, neither of us could stop working, as our benefits depend on our continued earning. So the first year alone, we spent a whooping $35,000 out of pocket to get people to come and relieve us.

I’m not crafty and really suck at making colostomy bags, which you have to cut and paste on, sometimes twice a day, so we had to purchase balms to soothe his bloody rashes. That meant at least $2,000 in over-the-counter, unreimbursable costs, plus oatmeal baths to calm his skin, which added another $1,500.

Here’s something really funny. Like the Frosts, our kid had to go to physical therapy, also. Some of his physical therapy didn’t qualify for benefits either, probably because it was only supposed to help him learn to do totally unnecessary things like swallow and learn to speak. Some of the therapists we went to didn’t even take insurance. The first year we spent at least $2,500 on that.

I’ve heard the Frosts being accused (falsely) of frivolous spending like purchasing a granite kitchen counter, but I’ve never read that the Frosts are unstable people. But we are! When the bills for the series of surgeries and five medical specialists my son required started pouring in, my insurance company decided to decline to be his primary carrier, instead giving that honor to my husband’s plan. My insurance company sent me a threatening letter announcing that I personally needed to get his insurance to reimburse the thousands of dollars or it was going to hold me responsible for the fees and begin garnishing my wages.

It was so confusing that sometimes I just paid the bills, even for covered services. That added maybe $3,000. That’s when I developed a twitch in my eye. Not long after that, when I was informed my son had a 95 percent chance of needing a new kidney, I lay down on the floor of the pediatric nephrology clinic at Cedar Sinai Hospital and cried. I kept crying. For a few weeks. This added about $10,000 to our bills for my personal therapy, reimbursed at 50 percent, and we invested approximately $2,000 in bottles of Oregon pinot noir for my husband.

Then there were the costs you can’t even begin to quantify. No one reimburses the parking fees at the hospital: at least 150 visits averaging $11 a pop, approximately $1,650. There were times I had to run to a pharmacy and forgot my insurance card (another bad choice), adding maybe $1,500 in tubes and clamps.

It wasn’t until it was determined that my son wasn’t getting enough food during the day and needed to be fed twice through the night–a process that for us included standing over his crib slowly pouring formula into his feeding tube over a twenty-minute period–that I turned to the state-contracted local Regional Center, which offered not only to fund some of his care but also to assist us in finding overnight nursing care. If you’ve ever tried to secure private nursing care, you know it is a full-time occupation. Ironically, when these nurses showed up, several demanded to be paid additional funds under the table! We received maybe $300 to $900 worth of services but had to pay out between $400 and $500 in cash to the caregivers. Again, I lost track, another bad choice.

All said, even if you subtract our pinot noir bills, our expenses totaled more than the Frost’s combined income. That was just the first year.

Anyhoo! The vetting process:

As to the character of Graeme Frost’s parents, Halsey Frost is a skilled woodworker and furniture maker. I’m Jewish, so maybe I have this wrong, but wasn’t Jesus a carpenter? I, on the other hand, irresponsibly majored in massaging my fellow students and wearing vintage clothes in the acting school at NYU and worked in show business.

Graeme’s mom has been sarcastically referred to as a saint in the conservative blogosphere, whereas I am truly degenerate. You can find pictures of me topless on the Internet, stills from a film titled Not Like Us (another bad choice; that movie was a dud!). On the other hand, my breasts are real, so no one can say that I frivolously spent money on plastic surgery.

Now, I am not looking for S-CHIP funds and only tell this story to drive home how stressful and expensive caring for a child with chronic illness can be, even when you’re lucky enough to have the income to afford private care. But I’m just a mom who’s admittedly made bad choices.

And while the right-wing blogosphere continues to trash the Frosts for their chiseling ways, here is a statement from my son’s doctor, Elaine Kamil, clinical director of pediatric nephrology at Cedar Sinai Hospital in Los Angeles:

In over 30 years of caring for children with kidney disease I have never met a family with resources who have gamed the system to get health care coverage for their children. I think some people who have comfortable incomes lose perspective on just how expensive it is to provide for the basic needs of a family and a child with a chronic illness and think a $40,000 or $50,000 income is NOT low income. Some of the parents in my practice earn in that range and qualify for Healthy Families, one of the S CHIP programs. The father may have health insurance through his job, say, working at an auto body shop, but to add his family to the company’s health insurance plan costs several hundred dollars per month that the family just cannot afford. I am worried that some of my current patients will lose their coverage the consequences of which would be devastating. It is unconscionable that denying these children coverage is even on the table.

See, I told you this would be funny. Good luck with the vote this week. Oh, and if you see any of those Republicans planning to support the President’s veto, ask if any of them are willing to donate a kidney to one of Dr. Kamil’s S-CHIP families. I’ll even remove it myself.

P.S. Our son is nine now and doing really great but he still has issues that our doctors say could be mitigated through research innovations , so if you guys have a chance could ya speed up some legislation on stem cell research, too? All of us parents are counting on you.

Annabelle Gurwitch

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