Tuesday, May 17, 2011

Craniofacial Mommas ~ Happy Mother's Day!

Okay its a bit late but I want to take a minute to say Happy Mother's Day to all of you mommas out there who really deserve pampering daily. To avoid any hurt feelings I will say that all mother's work hard but there is a special mom who sometimes dedicates her whole life to her child. She may not have ever chosen the hard work that she's subjected to but as a mom she will often power through any challenge set before here. These mommas who have children with medical needs, of any sort, (craniofacial, growth & learning delays, autism, asthma, neuro-tube defects, handicapped, cancer...ect..ect), would be Gold Medal holders if parenting were the olympics. They are the prayer warriors and the women that I trust to gather around when I'm having a tough day. Sure we have our spats, squables, mostly brought on by culture, religious, or personality difference, but we have a common bond that draws us back together in some of the toughest times. I am proud to call my craniofacial friends my family. Many of these mommas I've never met, I most likely will never meet a lot of them. However, we really get eachother on such a deep level that it was certainly written in the stars for us to be destined to come together one way or another. Its such a deep and unique bond that we can cry, laugh, and scream together...sometimes all within 5 minutes of last emotion. There is something special about being a woman brought together by a common challenge, and although in the toughest times its hard to find the silver lining the fact that I found a lot of my friends through support groups and Facebook seems to be the brightest lining of all. I know I'm never alone and I hope that my blog, my website( and my videos help bring other mom's to our network.   Please take a moment to meet some(not all) of my extended family in the video I'm posting and please share this blog as I plan to get things rolling to get information out there for more awareness of not just craniosynostosis but other craniofacial abnormalities that are a challenge on a whole family when their child is born with or develops one of the many conditions of the skull or face.

Again Happy ~LATE~ Mother's Day to all you that have one of the toughest jobs on this planet.

Thursday, March 3, 2011

Insurance ~ drama, delays, & appeals

L's insurance handed us our first denial the day of her surgery. Only an hour after her admittance into the pediatric intensive care unit we were notified by our craniofacial team that insurance denied everything.  I can remember thinking "Oh great, we're going to end up in the poor-house." Our surgeon told us not to worry about it and only focus on helping my daughter recover.  Although he warned it would be a battle to get everyone paid I tried my hardest to be optimistic, but at that moment I couldn't begin to imagine where I would even start to pay the bills that were already in the 5 figure range.  I tried best to put insurance woes out of my mind and focus on getting L through post-op recovery, but I couldn't help but imagine every drip in the IV being $20 washed into my little girls veins.  
As part of our being discharged we were given the instructions to get our first appeal started right away. We had no idea where to start but we learned pretty quickly that an insurance denial was not the final word.  A copy of a letter that consisted of only one paragraph typed up by some suit without a medical degree who was given the responsibility to glance over our Craniofacial Specialist recommended treatment simply said "Denied, not medically necessary."
DENIED?!??! The whole idea of insurance refusals still infuriates me to this day. How dare them, as a multi-million dollar company, argue with a medical specialist about what could be life-altering decisions just to save a penny? It seems almost laughable that insurance was first created to protect patients from hospitals and doctors who were price gouging. Like anything else, what started out as a good idea seems to have failed and now only increases the problem. Now people can't get the proper care, can't choose the most-knowledgeable doctor's and best hospitals because they don't fall in the insurance plans choice. It has all become a bidding war as of late with the lowest bidder getting the most business and I don't know with healthcare if that is the best policy. Would you want the least educated mechanic fixing your car because he charges the least? I know I wouldn't...and I sure as heck don't want the least educated craniofacial surgeon operating on my daughter just because insurance doesn't know her and could care less about her quality of life, to them she's just another disposable liability. Never mind that American's making a decent living can be left financially crippled by one serious illness while paying 30% of their income to health insurance every pay period. Something's amiss with letting corporations have so much power over every aspect of our lives.

I've veered a little off the subject, so I will step down off my soap box on this one.

So I sat down and wrote a 10 page, heart-felt, letter explaining my daughter's story, the need for her surgery, and the need for insurance to pay their part because financially it would ruin our family. I felt positive that surely the insurance would see that the op had already been done, and that they would research to find our CFS didn't do anything out of the ordinary. Surely they would have to pay up. No way could I imagine that the company with its millions of dollars already at hand would feel good about financially destructing my little family.  Two weeks later, a day after our post-op check, another letter was waiting in the mailbox. It was thin so  I hoped that meant all was approved. After all it should be thicker if they denied me again because they'd have to answer to 10 page letter. Wrong, one paragraph again and this time it said "Denied, deemed to be cosmetic in nature."
I was a wreck, I had poured my heart out to this company. I got on the phone and made a call to the number on the letter hoping someone on the other line would explain a little further and give me a hint on how I could get the claim paid. The phone call turned out to be a dead-end. I should have known the very company trying to save money would never give me any clues on how to write a successful appeal. The next call was to the surgeon, who wasn't very optimistic. He warned that we still needed to get L into her helmet in two weeks time and that he had heard the guy with the insurance company that was in charge of our case had never approved anything.  I explained to him that I would push until every last opportunity was exhausted because I had no choice. My Great-Grandkids would probably still be paying off our medical bills if insurance didn't pick up the cost.
So with a heavy heart I set about researching for a second appeal. This time I figured I would leave emotion out of it and put all my work into proving how L's treatments nor condition were cosmetic. Almost 20 pages were written detailing as much information that my slow dial up internet connection would allow me to find. I crammed the report and all the articles I had researched into a large manila envelope and mailed it off to the insurance company.
In about 3 weeks time, another letter arrived. L was set to have her head casted for her post-op helmet that very Friday. The first paragraph congratulated us on their deciding to pay for the operation that had been performed as well as the CT scans, the neurosurgeon's fees, the hospital fees, the Pediatric Intensive Care fees,ect..ect.. What a relief, we were no longer almost 100 thousand in debt! Though reading the last paragraph quickly squelched the celebration. L's helmet therapy had been denied. It was now deemed "Medically Unnecessary." It appeared as though I would be left holding a $5000 dollar bill for a helmet that my daughter needed, but we didn't have the funds for.  Others reading this might think we should have given up and accepted the victory of the major part of the bills being payed, to perhaps forgo the helmet therapy.  After all the major operation to allow her skull and brain to grow had already been performed. Perhaps under other circumstances we should have cut our losses and accepted defeat. However, L's surgeon didn't spend as much time contouring the plates and bones in her skull and she had a lot of unevenness and cosmetically looked a mess. Without the helmet therapy she would definitely need a second surgery in a few years time. 
So we went to our casting appointment on that Friday. Usually without insurance the full $5000 would have been due that day, but our surgeon pushed for us to get treatment started right away sayin we would figure out payment later. Other families have not been this fortunate and have found ways to pay the fees or have gone without the helmet due to insurance denials. Our OT warned us that this particular man at the insurance company had NEVER paid for a helmet in the last 5 years. We had our work cut out for us.
The third appeal was written with emotion again. I figured since they paid so much already then a little begging and pleading for them to continue treatment might help. I again poured my heart out, even thanking them for covering so much of the bill(never mind it took me two appeals to get there). I also include information for them on what the helmet was doing for L post-op, how it would prevent further surgeries, and how big of an injustice it was for the insurance company to deem it 'medically unnecessary'.
I confidently sealed up that little letter only to be denied as "a cosmetic treatment" a 3rd time a month later. Helmet therapy was set to be 5 months at the least and we were already 5 weeks into treatment when the third denial arrived. This one made all of us antsy. The OT was in fear of not getting paid and urging us to find a way to make $5K magically appear, the CFS was afraid we'd get kicked out of treatment before the helmet had done its magic, and I was afraid that I was going to drop dead of a heart attack from all the panic attacks and stress that I was suffering. Everyone was less-confident in our ability to win on a forth appeal. All we kept hearing was "this guy never pays for helmets". Well pardon my french but, tough-shit! I didn't have $5 to my name some days never mind $5 thousand! This guy was going to pay or I was going to keep appealing. I began to contemplate sitting off of the exit ramps with a sign and change bucket to raise some cash for this treatment and also looked into beginning fund raising. I knew I could host fundraisers and even had some attention from a news anchor,  then 9/11 hit. We lost our press due to the need to focus on the country...what bad luck. Appeal number 4 would have to work out or I was lost on where my next step would be to avoid L being kicked out of her helmet therapy.
The 4th appeal was something I have never thought I was capable of doing. It was as if I was writing a thesis for my masters with this appeal. Pages upon pages of research was thrust into what the difference between a cosmetic procedure and a reconstructive procedure was. Our greatest find that was quoted throughout the entire appeal was that   "According to the American Medical Association the definition of a cosmetic procedure is one that changes a normal structure of the body in order to improve appearance. While a reconstructive procedure is performed on an abnormal structure of the body to improve function, or return it to normal." L had a birth defect, nothing about her skull was a normal structure nor would it ever be since surgery had altered it.  Pages upon pages were written for not just the benefit of a helmet for after L's surgery but also the invention of the type of helmet L was in and the specifics of how it worked and a breakdown for how the cost of $5K was reasonable. I used old school footnotes for every quote and fact and made sure to print out all reference material. The last half of my appeal was written to argue what it would cost them in the long run if they denied a baby the ability to fit in with peers. I painted out a scenario arguing how, even if cosmetic, a skull difference that was not corrected could impact them as L's insurance carrier. I listed the eye issues her lopsided skull could pose and the amount of specialist visits that might need to be paid I argued the same about hearing, dental, learning and even psychological needs if she later needed counseling due to being traumatized by years of teasing. The bill as an astronomical amount that made the $5 thousand for helmet therapy look like pocket change. I poured my heart and soul and many sleepless nights into this 4th appeal. My thesis on dynamic orthotic devices and craniosynostosis would have made any professor proud. I used sticky-tabs and color coded them to the highlighting in my reference material, I may have gone overboard but I wanted to give them no reasons to logically deny us as cosmetic or not medically necessary again. I ended the letter warning this insurance company that if they denied us that we would not stop fighting. I told them that I would contact all media outlets possible and be sure that our story was told. I would keep throwing books of information at them until they admitted they were wrong. 
WE WON ON THE 4th Appeal!!!!!
I'll never know for sure if my letter was ever read or if they were intimidated by the amount of information I had included. After all, the stack was so thick I had to use a giant rubber band to hold it all together because no clam clip was big enough. I do know that I had gotten my daughter's treatment paid for because I had fought. Most insurance companies expect patients to take their denials and accept them. They don't want you to appeal and most people won't. Perhaps this man sitting behind his little desk had never paid for a helmet because parents paid for the treatments before they started and gave up on the hard work that goes into an appeal. I do know I take great pride in knowing that I got a win from someone that was known to never pay this OT clinic.
I will close this post in saying that although I was in nursing school at the time I didn't need to understand insurance laws or coding and billing. I didn't use my knowledge for medical terminology to win our appeals I just researched and wrote the facts that I found. Lastly, I was determined to not quit (really had no choice but to make them pay), and the only help I had was from my friends at CAPPS rooting us on through the whole stressful experience.  Now there is one woman out there that accepts payment for fighting your appeals for you but parents should not feel as though they need her. You can fight the insurance on your own and win. Ask for a little help from the specialist, research on the internet & at the library, keep a lot of patience and determination and you can beat insurance. However, if you can afford her services I say go for it. A child with any medical issue is stressful enough without having to take on the heartache & stress of writing and appealing to the insurance company.  If you have the spare cash why not let this gal do it all for you? But, if like me you don't have the money to be denied nor pay someone to take on the insurance company for you...know,  that you can fight and u can win. Remember, insurance isn't used to having people stick through the appeal process, those that fight have a greater chance of winning than those who don't. Stick to your guns and know u are not alone others have been through this before. For more info or you can email me

Sunday, February 27, 2011

This blog will go back in time before catching up to current

With this blog we are first going to go back in time a bit so readers can understand how we got to the point of needing a second reconstruction at the age of ten years old. My hope is to get it updated quickly as L has received a few gifts as she has prepared to have surgery in May 2011.

So much has happened since L's first operation at the age of  ten months old and due to some personal issues I wasn't always able to update our website and keep others informed. Also, we once had a website that reached thousands of readers. Sadly it was shut down when Yahoo ended geocities and we lost our chance to keep sharing with the world.

Now we're back with BeyondAGlimpse Mel's Knack and this blog. I hope you enjoy reading our blog, furthermore I hope that this will educate those who are just beginning this rollercoaster ride called craniosynostosis as well as help bring some new information and resources to those who like us have been on the ride for awhile now. Thank you for reading, sharing, and discussing. WE would love to hear comments to anything we have posted.,