By: Jennifer Murray

RSV = Rotten Stinky Virus

Well, I’ve shed some tears today after being DENIED our Synagis shots for RSV. For those of you unfamiliar with RSV (Respiratory Syncytial Virus) let me do my best to explain…..
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Update: Great news!! After being denied by our secondary insurance, which we were assured was the best route to take for approval, I was informed this morning that our primary health network does not make the final decision on these matters, and it appears we may get these shots covered afterall!! It will still cost us over $2,000 for the year, but this is much better than $38,000. Please keep praying, we are not declaring victory yet, but it appears we may get these covered. Thank you for praying and for all the helpful suggestions, we love you all!!

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Like the flu or common cold, RSV is a seasonal virus. It starts NOW and continues into about April. It’s common and easily spread infecting nearly all children by the age of 2.

Most kids (born at full-term) develop moderate – severe cold like symptoms, but due to preemies fragile, less developed lungs and lower immune system they are at increased risk for developing severe RSV infection leading to severe lung infection (ie: pneumonia), life-threatening breathing problems, hospitalization, etc.

Let’s take a look at the risk factors…..

  • Premature birth (35 wks or less) – CHECK
  • Heart disease – NOPE
  • Lung Issues – Clark had respiratory distress and Isaac was ventalated as well
  • Being Around Other Children – It’s nearly impossible to find help without kids, but we are trying
  • Family History of Asthma – Don’t think so…
  • Exposure to tobacco smoke – NOPE
  • Low Birth weight (less than 5.5 lbs) – CHECK, CHECK, CHECK, CHECK
  • Multiple Births – Ah, YEAH

So obviously we meet plenty of risk factors, yet we are being denied because we don’t smoke, don’t take our kids to daycare, and our kids are “too healthy”. I’m thrilled that they are healthy, but we’d like to think that having the Synagis shot has had something to do with that!

Synagis is the only approved medicine to protect from the severity of RSV, which is the #1 cause of hospitalization in babies under one year. However, if we paid for the shots on our own it would cost us $6400 dollars per month for a grand total of over $38,000. Yes, 38 GRAND! This just isn’t possible for our income. We are still working the system to see if we can get approved, but it’s not looking too promising at this time. If anyone reading has any advise, or info. we gain from similar experiences or connections, please let us know through a comment or email.

What does this mean for us if we don’t get approved? More isolation – which has been a blow today, just to be honest. After months of bedrest, hospitalization, then the NICU, then staying home to protect the little guys, and staying away from church, family gatherings, holidays, etc. it’s hard to think about being cooped up for the next 6-7 months. I’m more than ready to have a more “normal” life. However, I know that God is sovereign in ALL things and I can bank on that.

Would you join us in praying for a few things?

  1. Ultimately, that we would be approved for the Synagis shots
  2. For wisdom in deciding how much isolation is sufficient
  3. Contentment in all circumstances and outcomes
  4. That God would continue to protect our boys and that we would trust Him over and over again with their lives. They are yours, Lord

Sorry that this was not my typical light-hearted post. Just keepin’ it real…..I am overwhelmingly grateful for 4 healthy boys and all that God has provided thus far. Blogging helps remind me of this much is true!

Illustations and data taken from www.synagis.com

26 Responses to “RSV = Rotten Stinky Virus”

  1. Suzanne
    November 7, 2007 at 6:00 pm #

    jen…great post. i have directed everyone from my blog over to yours to read up on RSV and offer suggestions of how to help and most definitely- prayers! that SUCKS and we will be praying for a rapid solution! above all else, that clark, brooks, henry and isaac will have continued health, especially throughout these next months…love yall!!

  2. Kelly
    November 7, 2007 at 6:39 pm #

    Is this only for preemies? I am worried n/c my newborn cannot have a flu shot and she was born before I got one…

  3. Laura
    November 7, 2007 at 6:50 pm #

    I will be thinking of you. I do think you have to hit three risk factors for the insurance to approve the shots. You can always appeal it and often it is approved. You need to focus on your boys RDS at birth, Clarks problems. You can also say they are in a “daycare” like situation if you have a lot of other caregivers helping you. We only had grandparents but my ped said to say it. Good luck. I know it helped us to get them.

  4. Melissa
    November 7, 2007 at 6:54 pm #

    Hi!
    I have been following your blog for some time now and love it! I live in Lafayette. Anywho, I work for a case management company and I know what you mean when you say you got denied. We do precerts for Synagis everyday. I would appeal that decision and keep fighting. If there is anything I can do, you can email me at Ridgley51405@aol.com. I would love to try to help you guys out! PS, I also went to Dr. Henry, who I believe you also went to so we do have something in common!

  5. Laura
    November 7, 2007 at 6:54 pm #

    I reread your post. Your boys are absolutely in a daycare situation with other caregivers constantly helping.
    You have many risk factors to appeal…
    1-early birth
    2-low birth weight
    3-RDS at birth
    4-Daycare
    5-other young children in the home (who come with other caregivers daily).
    6-multiple birth
    There are likely more.

  6. Melissa Dovel
    November 7, 2007 at 7:15 pm #

    Saw you link on the Steece’s site. Sounds like you are getting lots of great advice. The only advice I can give is be more cautious then you think you need to be. I think that the Steece family had great advice in keeping any one from their home who has not had a flu shot. I personally feel that the babies who are a bit older are more at risk with all that they are touching and putting into their mouths. I had 2 babies born in the winter time (1/2 and 11/22) you tend to be more protective over newborns just by nature. My ONE who got RSV was born in June so when flu season rolled around I did not think much of it. She had it bad enough to be sick for a good 6 weeks but we were able to keep her from being hospitalized. She was a full term baby. I think the reason she got it over the others was from all the hand to mouth. Praying that you will be able to get the shots. Sounds like you have some good info that will help your case. Just don’t be fooled by their healthy sizes. Stay safe and healthy. Praying for your family:)

    Blessings,
    The Dovel House

  7. Anonymous
    November 7, 2007 at 8:22 pm #

    Hey, Jen, I am praying for you and your insurance situation. I agree that maybe some “creative appealing” is what you need to do. Obviously the boys have several risk factors. Crazy insurance people… ugh!

    As a side note, if you get a chance could you go read my myspace blog? I have some “preemie questions” that I could really use as much input on as possible to ease my mind! Thanks!

    Anne Schrader

  8. Leslie
    November 7, 2007 at 9:52 pm #

    I am right there with ya. We haven’t gone to church in 7 months, won’t be spending holidays with family, and probably won’t be doing playdates anymore. My boys didn’t get approved for Synagis b/c of the same reasons. I think I’ll link over to your site tomorrow too. Hang in there!!!

  9. Stacey
    November 8, 2007 at 12:03 am #

    Great post! I was fortunate enough that our ins co approved the 2nd season. So greatful since we are putting everything in our mouth. My co said if the ped orders it they will pay for it, how lucky! I plan to spend another winter in the house with the little tikes. At 9mo and born in the season and RDS diagnosis for all three only one was ventalated but I don’t want to take any chances. I will say prayers for you and your little guys. They are beautiful. From one Hoosier Mama to another keep up the good work.

  10. Anonymous
    November 8, 2007 at 12:15 am #

    How can they get away with this? Were your babies born before 33 weeks? That is usually the cut off! OH.. and another risk factor is just BEING A BOY!
    Our experience with RSV was with a singleton.. you can read more at http://www.caringbridge.org/mi/laban and to this day I am petrified he’ll get RSV and he is almost six years old! I am so afraid of it after watching him struggle on the vent for three weeks with it and almost dying three times. What we didn’t know at the time was that he had a primary immune deficiency… but scary all the same! I hate RSV! You can use our story with your insurance company if you want. Laban was born at 37 weeks and still this nasty virus got him SO sick! With Jasmine (younger sister) who was born in February I didn’t go anywhere until the end of April and didn’t let any kids (except ours.. we have 6 all together and I am expecting number 7 (well really number 8 as we lost a three week old boy due to a cord injury at birth)) over. I know how you feel about the isolation as we spent four winters that way! It gets to you after awhile! To be honest I felt like I didn’t even know how to act when I got back into public!
    Keeping you in our prayers.
    God’s Peace,
    Sarah

  11. J
    November 8, 2007 at 1:23 am #

    Jen – Prayers going up here. My trio is 9 now, but I rememeber the agony over getting the Synagis shots. We missed the cutoff since they were 33 wkers, but I had 2 older school age children which helped my case and the appeal process got us the ok finally. I would just say..APPEAL APPEAL APPEAL – stress the help issue – same as a daycare. You have the constant influx of outside germs.

    Meanwhile, you are in our prayers

    JO
    http://teensandtriplets.blogspot.com/

  12. Anonymous
    November 8, 2007 at 7:34 am #

    Our ins co covered the synagis for the second season and our twins just turned 1 yesterday. Reason was that the doctor said they had to have it but now I am really confused why ours got approved now that I’m reading your post and all the comments. Mine were born at 34w6d and only have the risk factor of being multiples and born a little early.

  13. Stephanie
    November 8, 2007 at 10:39 am #

    You will all be in my thoughts and prayers!

  14. Melissa
    November 8, 2007 at 11:19 am #

    Wow, I hope those boys get those shots! I am absolutely shocked that they were denied. My Joshua had RSV when he was 10 months old. He already had reactive airway disease and it was a scary experience because his oxygen levels were so low. He spent a week in the hospital and ended up with damage to his lungs- his asthma was always worse after the RSV. My Braden was born at 35w5d- not nearly as premature as your little ones- and he qualified for Synagis. We made it through last winter with NO RSV thanks to Synagis. After Joshua’s scary experience, I was so grateful that Braden got Synagis! I know I am rambling, but I did want to let you that I am praying your boys will get the medicine they need!

  15. Anonymous
    November 8, 2007 at 11:32 am #

    Gramma is still praying for the right answer. She loves all 6 of you. At least there is hope and we are moving in the right direction.

  16. Suzanne
    November 8, 2007 at 12:25 pm #

    gosh, great news on the update!!! woo hoo!!! i know its not final, but crossing my fingers! God sure does work fast sometimes, eh? 😉 love you…

  17. Anonymous
    November 8, 2007 at 12:26 pm #

    Believe that God can and will protect the little squirts without the help of this medicine. He is able and He loves those boys! Just PRAY!!! that they stay healthy!
    Amanda In OHio

  18. Anonymous
    November 8, 2007 at 4:48 pm #

    I can bring over some cigars or we can sue ’em. Just kidding. I have confidence that whatever the outcome you will handle the situation with grace and wisdom. If I can do anything to help, just let me know.

    Amy Cornell

  19. Anonymous
    November 8, 2007 at 9:44 pm #

    Around kids, yikes! Am I about to lose my favorite job?
    TW

  20. Twin-Daddy
    November 8, 2007 at 9:55 pm #

    I’m not sure if this will help you or not and I’m sorry I don’t have the details of what I learned last year when we were struggling to pay our copay for Synagis. You might email medimmune here http://www.medimmune.com/about/contact.asp
    and ask them about getting help to pay for synagis. There is an organization that helps cover the cost.

  21. Sarah Reaves
    November 8, 2007 at 9:59 pm #

    Got my flu shot today….but working with germie preschoolers and having a germie kid in school is not helping my case to come over. I’ll pray for you…but you do what is best for those kids. 🙂
    (isolate!)
    Love ya!

  22. lori
    November 9, 2007 at 9:01 am #

    it is ABSOLUTELY ridiculous that you are having to fight so hard to protect your children.

    thank you for educating us about RSV. i have a little girl, and i really knew nothing about RSV.

    i am thinking of you and wishing you peace, the appropriate vaccinations for your family, and not having to take a mortgage for them.

    -lori

  23. Jes
    November 12, 2007 at 8:57 am #

    Our daughter was born at 34.5 weeks (she was just one though, not four!- which I don’t know how you do that by the way… you’re my hero) Anyway…

    The doctors kept scaring us with RSV too, she weight 4lbs 15 oz when born and had a bunch of risk factors too.
    We were denied the shot too, because she didn’t go to daycare, didn’t have a basement and wasn’t around smoke a lot. he he.
    We just decided to trust God and go without the shot. We prayed A LOT. especially after a little girl in our church came down with it.
    Our daughter was fine! still is! So I’ll pray for your four babies!!

  24. Sheena
    November 12, 2007 at 10:49 am #

    You all are definately in our prayers!

  25. Ms. Perky
    November 14, 2007 at 4:23 pm #

    I came over here by way of Suzanne’s post. I’ve got 8 week old triplets who were born at 33 weeks all under 4 pounds (2 were 3lb 12oz and my littlest was 2lb 11oz). They all received their first Synagis shot in the NICU in October, but were denied outpatient Synagis therapy.

    After several appeals, ONE of our triplets, Abby, was approved for Synagis, but the other two were approved. Crazy! So we’ll still be isolated from the world and the other two will STILL be at a higher risk than necessary, and I’ll have to find someone to watch the other two while I take her to the doctor to get her shots so that they don’t have to be exposed to the germy doctor’s office while unprotected! I hate insurance companies!

    If you don’t mind, I may direct folks from my blog to this entry also. You said it better than I can!

  26. Ms. Perky
    November 14, 2007 at 4:27 pm #

    oops, I meant to say that Abby was approved, but the other two WEREN’T approved! Sorry about that typo!

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