The financial impact started very early on for us. My water broke at 23.0 weeks. We were told that I would probably go into labor within 24 hours so hubby took a leave of absence to stay with me in the hospital. One day turned into the next. I made it to 25.5 weeks. Hubby's short leave of absence turned into a month off of work without pay.
Paige spent 78 days in the NICU. Between my hospital bill and hers, the total was just short of $600,000. We had insurance so it was paid, right? Not all of it. Insurance wouldn't pay for any medicine that was not used as approved. Geesh.. what medicine was back then? It was all an experiment and meds were used off label.
Did the hospital work with us on the remaining $100,000 + bill? Nope. They were quite rude actually. We tried to pay the bill, little by little but it was impossible to do, especially because we were also paying for our own health insurance which cost us $900 a month and we now only had one salary. Does anyone know what it's like to eat Spagettios every day for months on end? I do.
After a year we filed bankruptcy.
Over the next few years our health insurance went up. We couldn't change carriers because Paige was uninsurable. We paid for therapies, specialists, medicines, leg braces and surgeries mostly out of pocket.
Turn to the government for help you say?? We tried that but we were turned down because hubby makes too much money and they don't take into account all that we pay out of pocket. When I explained this to the nice woman on the phone she told me that the best thing that we could do would be to get a divorce and then I could file the claim as a single parent. She told me that's what a lot of parents have to do when they have children with disabilities because the state only looks at gross pay. We were also told that every state is different and that we should consider moving to another state.
Neither of those options were acceptable to us.
Hubby finally got a job with a large corporation and we were able to get insurance through his work. Although it's a great policy, Paige's medical care still is a financial burden. When you add up all of the copays for specialists, our portion of hospital bills, our portion of medical tests, medicines, psychologist, psychiatrist, etc. there is nothing left over from hubby's pay. He ended up being transferred but unfortunately we went from one state that couldn't help, to another one.
We are not the only family that is suffering, financially, because of prematurity. There are many parents that I come in contact with that worry what the future will hold. How can we save any money when we live paycheck to paycheck?
Now, before everyone starts commenting that I am whining because my daughter was saved and now we are poor, let me say that couldn't be farther from the truth. My point is simply that prematurity affects more than just the child.