It's RSV Season... Again

There are few things that strike terror in the hearts of preemie parents like the three little letters RSV! All of us have horror stories about it! We have one too. May our story can be helpful to some of you who are going through it for the first time...

Elliot was born in June so by October he was 4 months old. At 4 months he had already had at 10 week NICU stay, 8 additional weeks home on O2 and 2 surgeries. You would think he would more than qualify for Synagis shots! Nope. The insurance company that Brooke and BJ had did not cover the shots at all. And at $1,000 per shot the $5,000 price tag for the season was simple out of our league. Their doctor suggested taking out a loan. But for 2 students this was just not an option. Few things in life get a grandmother more upset than seeing her children and grandchildren have to go without something they really need. So we looked at ways we could come up with the money for them...nothing we thought of seemed to come through. And the fact the Synagis shots are not preventative but only reduce the effects of RSV we were wondering if it was worth going into debt over?

In the end the kids decided that they would simply isolate Elliot and Brooke from the rest of the world. So we set out to hibernate for the winter which is great for bears but not so great for Mommies with small babies. Brooke is a very social butterfly so little did we know how extremely hard this would be. To make it easier we decided that my house could be an optional destiny to break up the monotony of their tiny apartment. Visiting grandma's house proved to be a welcome break. But...

We could allow any visitors with small children, who was sick, sneezed or coughed in the last 24 hours or who had sick family members. No trips to the mall, grocery store or church. Complete isolation all winter long. You just don't know how many people are sick in the winter until you become totally paranoid and obsessed about it! EVERYONE knows someone who is sick. But we persevered with buckets of hand sanitizer and masks...until the end of January. Ashley (Brooke's little sister) had her 16th birthday party at the local ice rink with some friends. Brooke was starting to lose it with no outside contact so we decided that it would be ok to go if we put Elliot in the cocoon of his stroller which has a hood that would completely cover him. One hour in the ice rink, inside the protective bubble of his stroller and back home.

A week later he had RSV. Now we don't know that he got it at the ice rink or not. We think it actually came home with Daddy who had sick co-workers, but when you get RSV it doesn't much matter where it came from. The stuff is the worst and nobody much care where they got it at that point! The outing still caused great feelings of guilt for everyone.

Elliot spent 8 days in the hospital. To say that he was one sick little baby is an understatement. About this time the $5,000 was starting to look reasonable compared to the emotional price we paid that winter. Compared to the almost $25,000 hospital stay it would have been a bargain for the insurance company as well.

So the next year Elliot's pediatrician suggested that Elliot have the shots again. And again the insurance company denied the coverage. This time we were armed and dangerous! We had the hospital bill from the previous year, a letter from the doctor and a letter from Brooke and BJ explaining how RSV and not having the shot impacted their lives. We alluded to the fact that additional medical coverage could be pending for mental and emotional difficulties associated with it.

All of a sudden the shots started to look like a bargain to the insurance company! So they approved the coverage - Elliot got the shots!

The moral of the story -
You can get your insurance company to pay for Synagis shots if you spend a little time and write a few letters. We didn't know it at the time ourselves and that is why we are sharing our story with you so that you can be smarter and learn from what we didn't know.

So here is what you do:

Contact your local hospital and ask them to send you an estimate of what it would cost for a week stay in the hospital for RSV. Be sure to include the costs of x-rays, tests and respiratory therapy.

Have you pediatrician write a letter explaining why he recommends that your child receive the shots.

You write a letter explaining how much money it will save them if the approve the shots. Be sure to include examples of how it will impact your life if your child doesn't get the shots. If your child is in high risk situations like day care or if you have older children in school that should be made clear to them. Make sure they understand that your child is a preemie as they are far more likely to become hospitalized from RSV than the general public.

Take all of this information and go through whatever appeals process your insurance company has in place. Be persistent! Call them everyday and become a thorn in their side if you have to. The squeaky wheel almost always gets the grease. Is that a too ancient saying to make sense? My kids always laugh at me when I say stuff like this...but it really is true!