genetics & bed-side manners

Nothing feels right about it.

Add the creepy atmosphere which accompanies our local Genetics office and it's like something I night-mared once.

The elevator is shaped like one of those rooms in a haunted ride at an amusement park. The kind that look normal before you actually step inside. And the doors always open before the lift actually arrives at destination.

Only to dump you into a dark dungeon-y hall. With rows of doors. And old curb alert couches.

I swear all the florescent bulbs flicker. I think they're morse coding "LEAVE NOW...and take the stairs"!

I'll never forget our first time. Another family was leaving as we were entering. They were so beautiful. So young. Too young to face the kind of heartache that has you boarding creepy elevators & navigating dungeon-y halls to visit Genetics Counselors.

She had an infant carrier on her arm. I couldn't bring myself to peek inside.

The passing happened in mere seconds. But when our eyes met it was like time stood still. And we both smiled sadly at each other.

I wasn't privy to her thoughts. Mine were less thought..more prayer. Begging God to protect their hearts. To make their baby whole. To lift the sadness that filled her from the heart up. That was masking her eyes. I always wonder if my eyes give me away? I'm not always sad. In fact, I've been on a happy run recently. But every time I chance a glimpse in the mirror...my eyes reflect back sadness. And an aged-ness that make-up just can't hide. Ugh!


Our insurance (which btw is not the same which denied Trev's ACTH) had approved the next round of testing...and we needed the paperwork before heading to the lab.

We'd arrived about 45 minutes before Trevor's next appointment. It's just easier to lump the visits when possible. And we figured that'd give us enough time to grab the forms...and head down stairs for the lab jab.

We were wrong.

On top of having to traipse up a creepy elevator...down dungeon-y door lined hallways...past old ratty couches...

...we also had to deal with her. The other Dr. Genetics. There are just two. We lucked out with being assigned the other her...who happened to be on vacation.

I've heard twisted tales of this her's bed-side manner. Including once walking out in the middle of an appointment with a parent (whom I know!) & other doctors. She got up & just walked out!


She was about as helpful with us. The paperwork we were hoping to grab & jab was nowhere to be found. She basically accused us of fibbing. That if our insurance had indeed approved the Rhett test it would be documented. It wasn't...she snapped. But asked if we would mind waiting for a minute anyway.

She receded into one of the doors. And slammed it shut.

We gulped courage and chanced a sit on a couch.

Half an hour later...and way past the time of being able to lump two appointments into one day...as she's about to tell us we'd have to come back another time...the office manager magically finds the paperwork!

Which was a great relief honestly. Even if we still would have to make another trip (which I'll share in another less rant-y post).

Oh...and she did throw us an apology bone.

But seriously? I'm more than a wee bit disturbed...and bordering on outraged...

Because it just isn't right that someone dealing with information so sensitive...is SO not! I...for one...think we & our babies deserve more!

(this has been a rant)


~Mama Skates~ said...

PLEASE write a book! ur stories r so poetic...i get what u're thinking, i feel what u must b feeling...ur words r so easy to follow & i get excited when i see u've made a new post!

sorry about dr evil...makes u wonder y they don't require a course in bedside manners before they can become drs! u'd think most human beings would b more sensitive & sympathetic - those kind shouldn't b allowed to practice!


JSmith5780 said...

Like going to a Genetics appt isn't heart-breaking and scary enough, the LEAST you could get is a compassionate Dr.

Are they affiliated with the Hospital?? I think I would complain.

labonte4 said...

Guess I wasn't the only one???? *LOL*

Dawson said...

Thank goodness we haven't had to deal with anything like that. I have no objections to pummeling sombody for rude treatment. especially under these kinds of circumstances. Hopefully those kinds of visits will be few and far between. God bless you guys

Monica, James, Connor McGuire said...

So sorry. I agree that doctors really need compassion courses. Our genetics Dr we went to 2 weeks ago was great. thank God! I think Neuros are the worst though. Closely followed by surgeons. I dreaded dealing with those 2 categories when I worked at the hospital. I agree with Mama skates that you should write a book. You always manage to capture my thoughts exactly! Good luck with your results. They tested Connor for Rhett's also. We should hear something in another 2 weeks? monica

baby trevor's mommy said...

Sharon - awwww...I'm blushing! I'll autograph your copy...someday! *smile*

Jen - you know...at the time I was too mad & in a hurry to file a complaint. But you're right...if we don't say something then who will? I just get tired of being the angry mommy!

B - I've been fuming since I learned it was her that walked out! I just can't even believe that someone in her position could be SO insenstive! Grrrrrrr

Dawson's Fam - you seem so sweet & mellow too! The mental pic of you slugging a rude doc is fun! *wink*

Monica - Maybe we'll be getting our results at the same time? We're SO lucky with our neuro...she's really really great. She even hugged me in the hall when we were at the hosptial the other day! I told J I wish every parent had a doctor like her! That said...some of the fellows in the neuro dept aren't so sweet...


Shanna Grimes said...

Ugh! I hate dr's with terrible BSM. They definitely should take a class in compassion when they go through med school. I know that they have to practice detachment, but do they have to disconnect their heart when they detach? C'mon!!

Am I the only one on the west coast here? I always feel like I am a day late when I comment ;)

baby trevor's mommy said...

Shanna - You're my fave west coastie! I think we should develop the curriculum for BSM! Get a focus group of families who deal w/hospital staff on a regular basis...and let us develop & teach! ;o)


Adesta said...

We have had a run in with a doctor who, not really rude, but said something that was totally way out in left field....

Haylee, my youngest, had what we thought was a mole on her face right next to her left eye. Well at about 8 or 9 months, it started growing and we noticed it was filling with blood. Come to find out it was just a vessel that had grown too close to the surface...well it popped and it bled profusely and wouldn't stop. We took her to the ER and the doc says to us, "Oh, don't worry, she can't bleed to death from her head". I was like WHAT?! Since when does it matter where you bleed from? You bleed long enough, you will bleed to death! My jaw just hit the floor I could not believe the guy. They ended up sealing it with surgical glue and it healed and went away completely. I would still like to know where he was educated though to spout off information like that.....

baby trevor's mommy said...

Adesta - we've had some wonderful doctors...and some terrible! I'm glad Haylee was okay in the end... I agree with you 100% though...head wounds bleed like crazy! Sounds like he didn't have a clue!