Monday, May 15, 2006

We've been lucky that, through the duration of the 4 months we had him, we never once worried about Nova's medical bills. He was on Medicaid from birth, and it covered every procedure, visit and prescription he ever needed. From Nystatin for thrush, right up to the open-heart surgery, and the gallons of high-dollar meds that kept him alive for 6 weeks. There were plenty of unmet financial obligations and hardships, but none of them were on the grand scale of his medical bills. Just gas (man, the gas!) and food and such were bad enough.

I remember when we lost Alexis, we received one bill alone that was nearly $100,000, one bill, from one doctor, for a child who only lived 12 days. Because of being on Medicaid, we don't get copies of the bills, no statements or anything regarding Nova's bills. I cannot fathom how much they must be.

Today we did receive a bill though. Or, rather, a digest of 21 bills. Seven pages which only reflected a small portion of his bills for the month of March, with a total of $30,000+ dollars. There seems to be a problem/mix-up/snafu/paperwork error that has Medicaid denying all the claims and I spent a large chunk of the day on the phone, getting the run around, and telling and retelling the story. All that's a side story, if you want to read the whole thing, I let off some steam in this rant. But for several hours today, I thought that I would be responsible for this debt - and most likely much more that I wasn't even aware of yet. It isn't that Nova wasn't worth that a thousand times over, and God knows I'd have found a way to pay it off ('round about the time I turned 90 most likely) but the idea of it was so overwhelming that I was beside myself. To have found out that it is simply (that's a relative term) and quickly solved was such a huge relief.

My point with this post is that there are parents out there who don't qualify for Medicaid, don't have health insurance, or have inadequate health insurance. CHDs, their repair, and the consequential related care brings on an astounding financial burden to many families. I can't imagine having to bear both the emotional and financial burdens at this point in life. It must be absolutely beyond description.

I wonder if there are organizations designed solely to offer financial aid in this case? I don't mean the type of thing that works only in one geographical area, or for only one sort of defect or disorder. I mean, is there a number, an address or website that parents of CHD kids can contact and get some sort of financial relief, regardless of their geographical location or their child's particular defect.

I mean, put it into perspective:
Approximately 1 in every 125 babies born in the United States. In 2004, there were 4.1 million births in the US alone. That means that roughly 51,000 CHD babies were born. Even if only a small percentage of those families are un- or under- insured, that's a lot of families, and a lot of debt.

If you know of any organizations that offer financial aid, please leave a link or some contact info in my comments, I'd like to start a list of links to them for other parents. We are lucky (in this case anyway I guess) to be dirt poor and qualify for Medicaid, but I can't imagine how many people are strapped with huge hospital bills, ongoing health care bills, and ever-deepening debt because of their child's defect. I can't donate much, but I can sure try to raise awareness, and build a list of links.

posted by Erin @ 11:36 PM   2 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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