My 11-Year-Old Daughter May Soon Be Uninsurable & I Feel Helpless

You don't have to look hard to see my daughter's preexisting condition. The scar spreads, red and angry in a half moon shape just above her left eye. When she frowns, the bottom half pops out, evidence of the damage that lies in the tissue beneath.






She rubs her fingers across it sometimes when she's stressed. She was rubbing it as we broke the news that her father had just lost his job and, with it, health insurance for our entire family. Less than 24 hours had passed since Senate Republicans began dismantling the Affordable Care Act, voting to rip away protections for those with preexisting conditions, when we got the news. As of right now, the ACA is still standing, but Republicans have already rejected an amendment crafted by Democrats to protect insurance for people with preexisting conditions, which has millions of Americans on tenterhooks -- including my family.

We now face trying to gain coverage via the Obamacare marketplace.

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And we now face another heart-wrenching fight as parents to end a nightmare that began for our daughter more than a year ago, five days before Christmas, when a dog we'd just adopted from a shelter lunged for her face, tearing his teeth into the muscles of her forehead.

We went to three emergency rooms that night, trying to find a plastic surgeon who could repair the devastation on my 10-year-old's face. Our home is in rural upstate New York, where specialists are especially hard to come by. We drove for hours before finding a surgeon on call on a Sunday night at a hospital over the border in New Jersey, a surgeon who spent more than an hour winding small threads through the edges of the silver-dollar-sized flap of flesh hanging above her eye. She was a lucky kid, he told us. Just a few inches lower, and the dog would have pierced her eyeball.

Lucky isn't a word we've been able to use much.

First the insurance company that covered us at the time refused to pay the surgeon's $9,000 bill. Despite repeated appeals, we were denied again and again, with United Healthcare -- one of the richest companies in America, with Fortune 500 estimating its revenues topped $130.5 billion in 2014 -- insisting that the fee didn't fall within its estimation of what it should cost to give a 10-year-old a chance at normalcy.

An appeal to the doctor brought our bill down to $4,500 (not counting our emergency room co-pay, co-pays to visit our primary care physician for follow-ups, and the other odds and ends that would crop up to treat the wound). We were (are) in debt up to our eyeballs.

And her fight wasn't over. My husband and I spent much of the winter and spring working our fingers across the scar several times a day -- scar massage is supposed to help reduce scar tissue from building beneath the skin's surface and also help with fluid build-up caused by the damage to the body's drainage system. Coating our fingers in massage oil, we pushed into the scar two to three times a day, running our fingers up and down and sideways, while she held tightly to the toilet lid beneath her and sucked in her breath to handle the pain.

We did the best we could. But the best isn't enough to return her face to what it was. Her surgeon has recommended laser scar removal, a procedure necessary because of the damage beneath the skin and the evident scarring.

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Let me be clear: She needs this procedure, and when we changed insurances last year, escaping United Healthcare, we were able to carry her "condition" over. We were going to get pre-approval for the procedure this time (which we couldn't do in an emergency situation). We were going to get help from the insurance company we have been paying exactly for this purpose: to step in when our child's health dicates help is needed.

Now her condition is preexisting. If the Republican promise to repeal Obamacare (and, with it, preexisting-condition protection) comes true, health insurance companies -- for-profit entities that make up a chunk of the Fortune 500 list -- will have carte blanche to say "nah, we don't wanna" when it comes to covering matters of life and death ... simply because they have a trail that begins before the patient landed on their roster.

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That is if we even have insurance for our child -- an iffy proposition as the ACA is further dismantled.

My now-11-year-old leaned over and patted me on the back as I sobbed on our couch on Thursday night. She'd overheard me talking to her father about what our health insurance status could mean and come to comfort me. "It's okay, Mom," she said. "I don't need it. I'll be okay."

I sat there, realizing I had two choices. I could tell her we'll make it happen, because every kid deserves to know his or her health is going to be taken care of when needs arise. I could deal with the fallout later on. Or I could begin preparing her for the worst: that it may very well never happen because kids and their health are the last thing some rich guys in Washington are thinking about right now.

I chickened out. I changed the subject. I wrapped my arms around her and told her that she was oh so loved, and we were all going to be okay, because that's what moms are supposed to do: make their kids feel safe, secure, and loved.

At least I know the last part is true.

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