What to Ask
This web site is not intended as medical advice.  Please consult your physician with any questions you may have regarding your child's condition.

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Hypoplastic Left Heart Syndrome (HLHS)
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This page was last updated on: December 25, 2010
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FAQ - Insurance/Financal


How much do the surgeries cost? 
This depends upon a lot of factors.  See our list of questions for your insurance company to start estimating costs.  Much of the cost depends upon how long the baby is in the hospital, and unfortunately, that can't be predicted.  Also, if you are traveling outside of your home town for the surgeries, all of your travel expenses (hotel, airfare, food) will add to the total cost.  There are low cost housing options such as the Ronald McDonald House, and often, the hospital has programs to help families.  Check with your insurance company first to see what medical expenses they cover, and if they cover any travel expenses, then check with the hospital for their programs.  Those on Medicaid should check with the Medicaid office to make sure they cover these life-saving surgeries and find out what hospitals you can go to.

Will our insurance company allow us to choose the hospital we want to go to?
You'll need to check with your insurance company to see what hospitals they will allow you to go to.  It may cost more to go to a hospital outside of your plan.  If you want to go to a hospital that your hospital will not cover, ask what the appeal process is, and follow the instructions EXACTLY.  Many parents have been able to successfully get the insurance company to allow them to go to a hospital of their choice, especially if you can show that they hospital you want to go to specializes in the treatment for HLHS.

Title V Programs for Children with Special Health Care Needs - State Directory
State Children's Health Insurance Program - SCHIP
Some hospitals also have programs to help - ask the social worker.  If you need to pay a lot of money yourself, hospitals often write off a large portion of the total.  Talk with the billing person at the hospital to see how they can help financially.

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