Affording HLHS

I spend a good chunk of my time reading other HLHS children's stories, but have yet to find any stories where the parents discuss the financial burden(s) of HLHS. Maybe this is because in the end, all that matters is the health and safety of their child. Maybe this is because they prefer not to discuss these matters. I don't know. To me, the financial responsibilities of an hlhs baby are a part of the journey. It's something that parents worry about, stress about, cry about. And since part of the reason we keep this blog is to hopefully be some sort of guidance to another hlhs family, I feel it is important to share.

We have health insurance-not the greatest coverage- but we have it. Dj and Austyn are covered through DJ's work, and I carry my own policy through my work. My insurance comes with a $50 copay for specialist visits(OB's are specialists), a $3,000 deductible, and a $6,000 out of pocket maximum for the year, which the $3,000 deductible does not apply to. Because Wyatt has been diagnosed with HLHS, we have to be seen by a high risk OB, and have ultrasounds at each visit(which are subject to a $50 copay- but we're not exactly complaining, we love that we get to see our little guy at each visit). The OB charges a Global Billing fee of about $12,000 to deliver, which also covers all prenatal care. (for reference, the global billing fee through my former ob was about $2400). We also have to see our cardiologist at least monthly, which is another copay. When Wyatt is delivered, we will have the cardiologists fees, the hospital fees, the anesthesiologists fees, and the OB's global billing fee. That's just for me.

Wyatt will be covered under DJ's plan, and will have his own $3,000 deductible, and a $7,000 out of pocket max. According to my friend google, the cost of heart surgery alone in the Denver area is $60,000-$90,000. Plus hospital fees, anesthesiologists, nicu charges, meds, transport, etc. another HLHS mom told me that for 3 or 4 days of meds for her daughter it was some $14,000. Just for the meds.

Best case scenario for us between October and the end of the year, we'll have racked up $19,000 in medical debt. And that is IF everything gets covered correctly and the insurance companies aren't a nightmare.

Then, add to this equation that I will be basically quitting my job. We've decided as a family that it isn't feasible for us to both work full time days, and that someone needs to be with Wyatt and caring for him at all times, plus be there for Austyn as he struggles through this time as well. So that takes our approximately $70,000 a year income and chops it right in half. We will be a family of four trying to live on approximately $35,000 a year. I did some researching today to see what government programs we might qualify for- food stamps, Medicaid, section 8 housing- we don't qualify. And that was even including $1,000 a month in medical expenses. So we won't make enough to come close to supporting ourselves, and we'll make too much to get any help.

These are foreseeable expenses. There will be things that we don't see coming, extra ER visits, hospital stays, oxygen, monitors, etc. and we can't even fathom being able to afford the expenses we can expect. How are we going to do this? We have rent, car payments, student loans, credit cards......and we live a pretty basic life. We eat out occasionally, go camping a few times a year, and the rest is pretty much bills, gas, and food. How are we going to cut our income in half, and even remotely keep our heads above water?

We feel like failures. We failed to protect Wyatt from this world he hasn't even entered yet, and now were trying to prepare ourselves to fail to financially support our family. Without help, we are destined for failure. We realize that we're going to lose some material things- and that's fine. We even realize that we're probably going to have to declare bankruptcy. That's also fine. But how in the hell are we going to continue to survive until then? There is a possibility we will get SSI for Wyatt, which at best is some $800 a month, but that is subject to income requirements which are rather low. So there is no guarantee. A few people have offered to help how they can, my dad has offered to buy us King Soopers gift cards every two weeks to help us with groceries. Tremendous help! But still, not a life preserver.

I just feel so helpless. I want to be able to do better, provide better, and I simply can't. We dont know how to deal with it. Do we start "losing" material things now, trying to save up a few thousand, or do we hope we do end up with some sort of assistane, and stay where we're at now?

It's just another stressful, headache causing unknown that we face, and we're coming to realize that the next few years are going to be utterly stressful, no matter which way you look at it. It's absolutely exhausting stressing and worrying like this every moment of every day. It's exhausting putting on our fake smiles and pretending that everything is ok.

I just wish it all really was ok.