When confronted with the life-altering news that our babies have a Critical Congenital Heart Defect, we instinctively batten down the hatches, and all of our thoughts and energy immediately are consumed with our babies and surviving each hour as it comes.
The rest of our lives are necessarily put on cruise control as our babies- and we beside their cribs- fight for their lives.
It seems repugnant that, at such a moment of crisis in the fight to save their babies’ lives, parents are forced to draw on their strained emotional and mental resources to argue the fine print of their insurance coverage. Yet this scenario plays out every day in Pediatric Intensive Care Units across the country, literally as parents are standing next to their struggling babies.
And this, in one respect, is the preferred problem to have, as other families are without any insurance coverage. What would you do if you found out that your baby needed surgery, but that it would cost you $400,000 out of your own pocket?
These are the more dramatic examples of how money can hinder families from getting the treatment their children need, but it comes up in countless ways in caring for our heart warriors.
We want to help families navigate the various systems and maximize all the financial resources they have available to them, so that they can focus on the only thing that matters- getting their baby home, and on the path to a happy, healthy, productive life.
If we reach our funding goals, we want to set up a financial center to provide families with answers to questions related to their CCHD diagnosis that affects their family’s financial health- from government assistance, to strategies in dealing with their insurance companies, to tax questions, to their state’s Early Childhood Intervention program.
If you also believe there is a need for help in navigating the financial hurdles resulting from a CCHD diagnosis, please consider donating here.