The Plain and Simple Unfortuntate

The "Clinical Reason for the non approval of the Molecular pathology procedure : Cosmetic, (EA, Contract exclusion, not medically necessary) per the MPG. Whole exome sequencing and whole genome sequencing are considered experimental, investigational and or unproven for all indications because there is insufficient evidence in scientific, peer-reviewed literature establishing that services are generally accepted in the medical community and/or proven to be effective for the submitted Dx."

This is the exact response I got from our insurance company (Blue Cross and Blue Shield) when I submitted the claims for them to help cover the expenses for the genetic testing that we did to figure out what type of genetic disease/disorder we were dealing with when it came to Liam and what it meant for our possible future pregnancies.

The Pacific Ocean - Christmas 2014

I'd love to sit here and write an endless rant about the "inconvenience" of having to to pay out of pocket for all of this, when none of it was our fault, we didn't know anything about it to begin with, and how the representative "kindly" (someone - please pick up on that sarcasm) explained that "even IF they would cover it, we would not get any money back anyways because only a percentage of each of the charges would go towards a HUGE deductible that we would have to pay for OUT of network costs (we were already maxed out for IN network costs) and since only a percentage of the testing costs would go towards covering that, we would still owe the deductible before anything would be "covered" but it would end up being even MORE than the costs of testing that we already paid for out of pocket. I would LOVE to talk about the igonorance of that.... But...

Instead... I'm going to rant about the principle behind it all. Can someone please explain to me how two perfectly healthy people can have a perfectly normal pregnancy and birth a perfectly healthy seeming baby boy only to watch him pass away two months later from a medical mystery condition that was only assumed to be a "best guess" diagnosis from an autopsy that points to such a rare condition that less than 200 cases have ever been reported in the WORLD - How are we expected to proceed?!? The autopsy literally said that genetic counseling was recommended. This was the only way to determine where in his DNA the problem occurred and how it was passed on to him and how it will have a 1 in 4 chance of being passed on to each of our other potential children. Yet, Our insurance company labels it as "experimental" and "cosmetic".

I count my blessings that we were financially able to cover the costs without having to lose things or set ourselves back. I really am. I'm thankful for all of the positivity I do have in my life and the strength to be positive. I'm at a sort of peace to at least have answers and that's more than most even get. I'm thankful for the support of our families and friends and that we saved and worked hard for our income so we were able to pay for the testing. But, What on earth would others do or even be able to do? They force you to pay out of pocket for the testing or they do not do the testing. There are no competitors to consider or to "price match". There's only one place in the US that even DOES this type of DNA sequencing. Unbelievable! Then the insurance sends you an automatic reply that the only test that could maybe help you know more about your genes isn't supported due to a lack of "evidence" supporting its effectiveness.... Well of COURSE there's a lack of information!! Who has the brains, time and money to do the research for a disorder that affects much less than 1% of the entire population of the world!? For that matter, who even cares?? There's so much that's out there that is genetically unresolved, it blows my mind, and we lack the resources to fill in the blanks! After a month in the NICU with Liam and countless IVs,  tests, spinal taps, ultrasounds, and X-Rays the doctors and specialists from Mountain View Hospital and Sunrise Hospital (the leading neonatal and pediatric provider of the region) weren't even able to determine Liam's condition until the autopsy! It just seems like there's an answer and support group/community out there for everyone and it just took me awhile to realize the lack of options for these other rare but fatal and/or serious disorders. The ones that are unexplained, genetic and unpreventable. Who would really be able to invest to crack this case and create a cure or treatment if it was even possible? If only those Greys Anatomy doctors really existed, huh...?

On top of this, the realization of the amount of people who deal with this kind of stuff is just upsetting. The lack of support groups is disappointing, and even in the ones you do find, there's no real advice or support other than "I'm sorry" and "just have hope, it will happen". WOW. True or not, we are on our own. Its not something that can be fixed or changed. Its not that we are alcoholics and we have to find a way to fix it and stop drinking. Its not that we don't have enough money and we have to fix it and find a way to make more and/or adjust our finances. Its not a mistake that was made. There is no fault in it. There is no fix to it. What do you say to someone in this situation? I couldn't even tell you. It's just very unfortunate. We have to find our own hope, our own perspective and our own way to find strength to try for something as simple as getting "knocked up" and having a successful pregnancy and a "healthy" baby. I never knew it would or even could be such a challenge. I knew of stories, but I was oblivious to their lack of options. IVF for example is a hope for some, most even. But the chances of that are even slim. Its an expensive, stressful, very exhausting process with no guarantee, but still remains as the best chance some people have.

Things like this makes me question ever judging anyone for appearing "grumpy" or "angry" or like someone just "pissed in their cheerios". Well, Maybe someone did! People love saying things like that right? Like "wow, its a gorgeous day, what do you have to be so sad/mad about" I know this sounds harsh, But Ive been dealt harsh cards to play. Maybe these people do have things going on that are so much bigger than what people realize or what some people could ever even fathom. Maybe having clothes over their back and a roof over their head pales in comparison to what was taken away from them or they were denied the chance of. Maybe they are drowning in medical bills to chase a dream. Maybe they are living out their life the best they can after accepting their genetic or fertility challenges. Things that they didn't choose. Things they were born into. Things that weren't a result of their life choices. Things they have no control over changing. Things that no amount of prayers could change (God knows we tried). Maybe they need a hug or an extra smile. Maybe they need more recognition and patience for being brave enough to face the public in the first place. Maybe they were happy before and can see all the beauty in the world but now they see what they don't have and it hurts more when it surrounds them while others are taking it for granted or complaining about it while its right in front of their faces. Maybe something as simple as an innocent baby's smile could light up their day, or send them spiraling.  I for one take an extra moment to think of the maybes, count my own blessings, and offer the unsolicited smile even if it is forced. I know the people I surround myself with (friends and family) do the same. They show this type of kindness. I wish more people would do the same, and expand their minds to things that are bigger than them. I know the random acts of kindness has lifted me out of more than a few dark moments. It just might make someone elses day too. Maybe.