Tuesday, November 27, 2007

Melt Down

Today marks my first (and hopefully last) mini-meltdown on my OB's office. Subject: my ability to get an appointment for genetic testing before I hit the 13w6d cut-off.

The Wednesday before Thanksgiving I had my first regular OB appointment. No fancy u/sound, but I did hear Junior's heartbeat on the Doppler. I am approaching the end of the first trimester (11w2d today), which means time for first trimester genetic screening and testing. I have always been very clear with my OB that I would like a CVS. She supports my decision given the following factors: my age (late 30's) and someone genetically related to us has a child with Trisomy 21.

Much like miscarriage or even infertility, most of us might consider that having a child with the kinds of chromosomal or neural tube issues that can be revealed in utero as something that happens to "other people." And then it happens to someone very close to you. And your perspective changes. Immediately.

As such, I researched all the options available for genetic screening and testing, including the pros and cons, before I ever got pregnant. Additionally, Cowboy and I had discussed and agreed upon our choices and the subsequent decisions given the outcome, again, before we achieved a pregnancy. I don't refer to myself as Ms. Planner for nothing. It was a pact from which neither of us wavered.

Until this pregnancy. Which was so hard won. I found myself wavering. And thinking more about just having the nuchal translucency screen, with no risks of miscarriage, and hedging our bets.

So I talked to the person who has the Down's Syndrome child and pointedly asked which tests she had done. This is not something I wanted to do because, for me, asking sounded a little like blaming. What had she done or not done to determine the risks before the surprise delivery of a baby with Trisomy 21 who had to be airlifted to a bigger hospital minutes after birth because she wasn't breathing and underwent total reconstructive surgery to build a fourth chamber in her heart at age 2 months.

She had done the nuchal translucency test. And was given a 1 and 4,999 chance of having a baby with Down's Syndrome.

Hell, I'd have played those odds, too.

But I'm not going to. If only the maternal-fetal clinic I've been referred to would let me schedule what is my right to request and have: a CVS.

For some reason, the referral from my OB only requests first trimester screening, which is the nuchal translucency screen and genetic counseling. I tried explaining to maternal-fetal clinic that given our family history, I would not even believe the results of an NT screen, so please, just schedule the fucking CVS. That way I can either make the heartbreaking decision or finally bond with this fetus.

But noooo. I had to call my OB's office and outline - in tears with my voice wavering in a high octave - to the nurse-on-duty very clearly why I would like a CVS:

1. I am in my late 30's.
2. This is my third pregnancy and I have no living children.
3. My XXX has a child with Trisomy 21. She had an NT screen, which gave her very low odds of carrying a child with Downs.
4. I am not letting myself bond with this baby until I have answers.

I mean, for fuck's sake. It is not like I just heard about CVS in a blurb in USA Today and decided this was the test for me. My - our - decision is the result of thoughtful primary and secondary research and subsequent discussion. Well, I discussed. Cowboy, in his cowboy-like way, listened and said, "Have the test. The first test you can have."

Thank goodness the nurse was an open and understanding soul. She completely agreed and said she would change and re-fax the referral to the maternal-fetal clinic.

So now I wait for the maternal-fetal clinic to call. Again. I'll have to stop myself from having a little edge of "I told you so" in my voice when I FINALLY schedule the appointment.

I know the subject of genetic testing (amnio and CVS) versus genetic screening (NT scan and quad blood markers) is so deeply personal and scary. With testing, you know absolutely, but there are very clear risks. With screening, there are no risks, but you are only given odds with no guarantees. The decision seems even harder when you factor in the effort taken to even have the privelege to make such choices.

I sometimes wish I didn't think so much. That I was carefree and confident. That I was a happy, bubbly pregnant woman. But that's not me today. I have let this entire process rob me of so much reproductive confidence that I am angry with myself.

I just want to get past this test and the first trimester so I can start to live a little again. Why is that so hard for me right now?


Lori said...

This sounds like a horrible place to be in.

I hope you're able to get the test soon, and that the news puts your mind at ease.

I can totally see why this is hard for you now.

Carrie said...

I think the saddest part of miscarriage (after the obvious) is that it takes away the joy of pregnancy. It just isn't fair that you are so concerned over the decisions you have to make.

The awareness that things can go wrong and do go wrong, is so hard. It colours everything.

I hope you can find peace with your decision and, of course, I wish you all the strength you'll need to get through x

niobe said...

I hope you get the CVS scheduled and completed as soon as possible. It's so hard to be in the position where you're still holding your breath, not able to let yourself bond.

E said...

Well, your meltdown was clearly justified. I hope you can get the test done and move on to be the happy pregnant lady you have every right to be!

You are so close! Don't you wish you could just write a plan out for this? Ugh.

Thanks for your comment on my blog - even though we just cyber-know each other, I definitely feel a bond with you and it means a lot to hear you say such nice stuff!

nancy said...

I had this very discussioin with my husband last night, discussing it with my best friend this morning. I, too, want the CVS asap too.

Good luck.

megan said...

i hope you can get the test done soon and can put your mind at ease.

Von said...

It seems to be the season for screening at the moment. I've got my 12 app. today. Had bloods done last week to coincide with todays app to check for Down's etc.
Having had previous m/c's I'd be lying if I said the thought had not crossed my mind of things not being hunky dory.
My heart is a little in my mouth, firstly to see if we still have two and secondly if they are ok.
We shall see, we shall see.
Mentally and emotionally this is a big day............ but I will cross that bridge, if needs be, when I get to it.
One step at a time. That's the only way I can manage it.
One step at a time.
Thinking of you and hope you get your test.


Malloryn said...

Best of luck to you... I hope the CVS will be scheduled soon. It must feel like you're holding your breath right now.

JJ said...

Im sorry youve had a difficult time--the test is scary, and I know how hyper-aware we all are of the things that "could" happen. my hope is that all the coulds stay put, and that you have an uneventful test.

LJ said...

Good luck with the CVS. I totally understand...

LJ said...

Good luck with the CVS. I totally understand...

Meg said...

Good luck with the test, I think it is a good idea to get exactly what you need right now from your docs.

This is another reminder of how the worrying of a mother will never end. It starts with the first 12 week worries and then it turns to the testing and then the thoughts and worries of actually going through labor and then....the real worrying begins when you hope they are okay/on track when they are born....ugghhh.

Kim said...

I hope by now that you have the test date in hand and can finally get some answers.

Doesn't the red tape crap piss you off??

Wordgirl said...

Oh Ms. Planner,

I think anyone, anyone in your position would feel the exact same way. I had a friend once who told me that I would never be as hard on other people as I am on myself -- be easy on yourself.

I would do the exact same thing.


Geohde said...

Thank you for stopping by my angst ridden blog to comment :)

I know how this turns out, but I still wanted to say that your 'until it happnes to *you*' phrase really hit home. It has to be somebody out of the thousands, and once it was me.