Can't Sit Quiet

"Not compatible with life"

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Ok, here's your fair warning/disclaimer for this post since I am about to touch on some touchy stuff.  It is with the utmost importance that you take the things I am about to say at their face value and not to extrapolate them into the realm of inferred assumptions.  This post, in all likely hood, will come out scattered as buck shot from a shotgun, but I know the concept of what I am trying to say needs to be said.  So please, bear with me.

First things first, if you're new to this blog and our story I encourage you to pause before digging deeper and Start at the beginning (CLICK HERE) in order to come into this post with the proper frame of context.

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Ok, welcome back.  I may have mentioned it in a previous blog post, and certainly if you've ever talked to me in person about our journey thus far with Abriana you've heard me make reference to this amazing group on Facebook of parents with kids born with an encephalocele and other neural tube defects.  This group is a life saver, and I mean that not in the exaggerated overly dramatic way that one might refer to a friend who just tossed you your keys that you didn't know you left on the store counter.  Rather, in the most literal sense.  This group saves lives.  Babies lives.

You see, in the 2 years my wife and I have been in this group we've both noticed one common trend among every single parent who "walks in that door".  We all found this group because everyone who was supposed to be giving us guidance for our children gave up.  Every parent that comes to this group usually posts an introduction and tells us about their story, and the story always sounds exactly the same.  "We just had our 22 week ultrasound and it was discovered that our baby has an encephalocele."  "The doctors are suggesting termination"  "We just don't know what to do."  "Have any of you experienced this?"  "The doctors say our baby, if he/she even makes it to birth, will not be compatible with life."  Not Compatible With Life.  One parent even had their doctor go get a text book on the diagnosis and point to the phrase "Not Compatible With Life".  So there we've all sat, we've been talked to from a text book rather than explained the full scope of the diagnosis.  When the very physician who you trust to give you proper advice on the care for yourself as well as your loved ones tells you you're carrying something that is "not compatible with life" it's extremely hard to question that.  When the hospital you're supposed to deliver at, full of excellent medical professionals tells you "We will not do this surgery because it has been determined unnecessary" and refers you to hospice care instead, you find it extremely hard to question that.  When you're made to feel completely alone in the world because this condition is so rare, you find it hopeless to be able to actually find another case similar to your child's, let alone a case with a positive outcome, you find it extremely hard to question what you're being told.

Now, I must take a very important step to the side here, in all the stories I've heard that I paraphrase for this post do I blame the doctors in any of the cases?  Rarely, very rarely.  Pediatric doctors/surgeons are some of the most caring people I've ever met and I understand what we're dealing with is one of those extreme corner cases of a diagnosis that there just isn't a lot known about, and in that situation a doctor is forced to refer to what medical literature has to say.  Here comes the real problem and disconnect though.  When it becomes acceptable to brush off a corner case because it's a once or twice in a lifetime interaction for some doctors, kids die.  Again, this is not a play on emotions for the sake of sensationalism.  A majority of people put in this situation on this condition will choose to terminate rather than continue a pregnancy.  By no means am I faulting anyone who's terminated a pregnancy under these conditions.  When all the medical professionals around you are telling you to terminate you can't help but trust them, you shouldn't have to feel like you need to doubt them.  After all they're the medical professionals, who are you?

As far as I know this Facebook group may be the only place in the world where such a gathering of parents exists, the members of this group span across multiple continents.  That is far to small of a target to continue the course as we have been and hope things change for future diagnoses.  No, that is not good enough.  Clearly lack of information is the real enemy in the story, not the doctors.

So what am I trying to say?

What AM I trying to say... I was hoping after rambling on for a whole post that that answer would reveal itself to me.  I guess I am left in saying that when you hear someone trying to spread awareness of something, that on the surface, means absolutely nothing to you and even sounds so small and insignificant, look past that.  Look past your natural reaction to place a measuring stick against it and instead look into it.  Spend 10 or 15 minutes learning about it.  That is the sole purpose of any awareness campaign to, you know, spread awareness.  It sounds so idealistic and unrealistic to think anyone has time to do this every time they hear someone trying to spread awareness for something, but there we go again measuring something up and determining it's too insignificant.  Learning about things beyond what affects our day to day life is the only way we move forward.

For parents of children with this condition, or other rare conditions who were greeted in a similar manner by medical professionals.  Don't let this opportunity pass by.  Margaret and I are in the process of putting together a long letter as well as pictures to send the original doctor who diagnosed Abriana.  To date we have made no contact with him since the last time we walked out of his office to find someone who could help us.  That's not helpful, nor is contacting him with a spiteful attitude of wanting to rub his nose in what our beautiful daughter has become.  He needs to see what she's become because he needs to know how this condition could turn out.  The last thing we would ever want is for him to get another patient with this diagnosis and proceed the same because he has yet to see a positive outcome.  We have a responsibility to spread the awareness.  Every parent of every single child is that child's biggest advocate but in the case of a rare condition in which information is lacking, we become the biggest advocates for all future cases as well.

Now, one last caveat that risks invalidating my entire post thus far.  This diagnosis and many other neural tube defects should not be down played.  The absolute last thing I want anyone to take away from this post is that "it's not so bad if you stick it out".  This can be a terribly tragic condition, in which some cases do actually turn out to be "not compatible with life" and it's awful and breaks our hearts every time we see one of those cases find our group.  But just because something can happen, doesn't mean we should be painting with the broad medical brush that it will happen.

I say that that last paragraph risks invalidating my entire post because there is just one thing that keeps it from actually invalidating it.  I really want you to meet just a small sample of the kiddos in our group, and I have to ask you, do they look as incompatible with life as their parents were once told?