Exhausted

By now you have heard or read of the unusually high number of Congenital Heart Defect (CHD) deaths during the past week. There have been at least six (some have stated that at least ten have passed, but I personally know of six. I’m not certain of the others.)

I’ve become e-mail friends with Joshua’s mom. Joshua was born August 16, 2010 and departed October 6. His mother was by his side practically the entire time, but what’s more, Joshua was never stable enough to travel. He never saw the world outside of the hospital.

52 days of hospitalization, two major heart operations…. the costs are going to be enormous. Joshua’s family is certainly physically exhausted, and before all is said and done they’re going to be fiscally exhausted.

When I was in the Intensive Care Unit after my first surgery in 1967, the cost was $66 per day. After I had a stroke in 2002, Intensive Care was $2200 per day. Note that in both cases the price quoted is basically a “rental fee”. It pays for the right to lay in the ICU bed for 24 hours. It does not include the cost of seeing a doctor, specialized nursing staff, drugs, or monitoring devices. I’ve stayed in hotels that cost $66 per night, but I have never stayed in a $2200 per night hotel. I doubt that I ever will.

The “average” Congenital Heart Surgery and hospitalization could easily cost $100,000. Where is a young family supposed to get that kind of money?

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9 Responses to “Exhausted”

  1. heather Says:

    that’s awful!!! cardiac critical care at SickKids is $2500/day (again, just the bed space… meds, surgery and staff are “extra”), but thankfully, in ontario, we don’t have to pay a dime. all i have to pay for is parking, food, accommodations when asher is in the unit in toronto (london’s unit has a “bed” in the room for parents)… and even that drains my finances. i can’t imagine having to pay all that money… my heart just bleeds for these families. so much stress on top of the “regular” stress of a sick child. 😦 i wish there was some way i could help them… 😦

  2. Linda D Says:

    How exhausting for all the families.

    Gabby’s bill for her OHS was around $500,000. That was 3 1/2 weeks in the hospital, most of it in the ICU, and a week on ECMO. We were unfortunate in that she coded, needed CPR, was on ECMO for a week and was in the hospital for much longer than is expected for ToF repair. On the other hand, thanks to our insurance we didn’t have a huge out of pocket expense. More importantly than all of that, she’s a normal, bright and loving almost 5 year old. Her cardiologist calls her an ECMO superstar.

  3. Jill Haskins Says:

    Steve,

    Just a week before Joshua passed, we were told that just the hospital bill alone was at $450,000. That was only for the hospital. Not doctors, medications, surgeries, surgeons, etc. That is simply the hospital bill.

  4. Carolyn Compton Says:

    Sounds so hard. I can’t imagine having to make choices based on the balance of finance rather than best outcome only. Some needed reform perhaps.

  5. Kim McGee Says:

    Our son was born and had surgery in South Carolina. They had a program called Children’s Rehabilitative Services that would pay for some things not covered by Medicaid or private insurance. It was something that my husband just happened to find while researching ways to pay for our son’s care. The social worker at the hospital he was born at (and diagnosed at) didn’t even mention it.

    There needs to be a resource that allows heart parents to find out what financial assistance is available by state. Do you know if this exists? Is this something the various CHD organizations should have?

  6. Anne Mulvey Says:

    Owen reached our insurance policy cap after 2 days. He was on ECMO after his Norwood, our bill from the hospital was 1.1 million, not to mention the neurologist (9K), plastic surgeon(7K), cardiologists bills(60K).
    We filed bankruptcy – there was nothing else we could do.

  7. Lilian Says:

    This is why, as a CHD patient, I am so glad I live in the UK. Will Joshua’s family really have to pay all that money? Sorry, I don’t really know how the American system works. Is there any assistance they could get?

    • Steve Says:

      There is usually assistance of some type available, but the amount varies and isn’t nearly enough. They’ll be responsible for the bulk of it.

  8. Nathan Says:

    Everyone who has a CHD child or is an adult with a heart defect should give serious consideration to emigration to Canada.

    I lived in MA for the past decade and recently returned to Canada. I witnessed the many tragic situations in my own community where families were forced to ask for charitable support to manage their medical needs — or worse, declare bankruptcy, then look to Medicaid for support.

    Canada has a tax-payer funded national and provincial health care system. It is not socialized medicine as it is often described by Americans.

    All Canadian hospitals are independently financed and operated as non-profit incorporations — and all doctors, cardiologists and surgeons are private sector professionals. They bill the “insurer” in the very same way they do in the U.S. But the “insurer” in Canada is tax-funded by individual and corporate income taxes; and operated by each Province — unlike US Medicare which is run by the Federal Government.

    Sadly, there are lifelong expenses associated with CHD that could easily exceed the lifelong limit imposed by U.S. private insurers. And then when your child becomes an adult he/she will be responsible for their expenses. Even the fact that CHD patients will now be able to get private insurance with a pre-existing condition doesn’t change the cost side of health and drug care. Private insurance for healthy individuals is already unaffordable.

    I can only imagine the experience of losing your child and having to go bankrupt at the same time…or imagine having to make the urgent decisions surrounding the medical needs of a child or loved one only to have it stalled or interfered with as a result of its cost. It’s a distressing factor that none of us in the civilized world who have ACHD or a child with CHD have ever had to confront.

    It may sound like a provocative invitation to you all south of the border. But Canada needs immigrants! In fact, there is a long list of required “job categories” that give the applicant and his/her family “landed immigrant” (a.k.a. green card) status immediately — which confers automatic full health care services with no co-pays for any health service of any kind — for life.

    And as for the competence of CHD care? Sick Kids Hospital in Toronto is one of world’s leaders in pediatric CHD and is one of only 8 partners in the Pediatric Health Care Network program sponsored by America’s NHLA. Furthermore, the CACH organization in Canada was responsible for writing the “care” bible for ACHD patients. It is now utilized world-wide.

    So you get care for free, and you get it from leading providers.

    Furthermore, if your new employer does not provide “drug coverage” don’t worry. The total cost of a drug in Canada is often less than the cost of the co-pay your insurance provider demands in the US.

    Finally, the most recent efforts to improve “universal” health care in the US will not fundamentally change your level service since it will remain under the control of the private health care insurer and/or private hospital for decades to come. Bottom-line? You can still go bankrupt even with private health care insurance if you have life-long medical needs.

    It’s not for everyone. But moving you and your family to Canada is a viable option for many people. And who knows, it might just be you…

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