Friday, August 13, 2010

I'm Defective


After Monday's midwife appointment, I'm glad I live nowhere near Arkansas, or I'd be knocking on my Aunt's door and promptly screaming at her.

Apparently 3 years ago when my cousin (Dad's half-sister's daughter) went into labor with her daughter, there was a very serious complication and she almost died.

Fast forward three years and my aunt finally mentions to my dad that I should be tested to see if I have the same condition Shelly has since it's genetic.

So at my midwife appointment two weeks ago, I asked to have the blood test done and on Monday I got the results -

I'm positive for Factor V Leiden.

It's a rare blood clotting disorder that occurs in about 5% of the Caucasian population, but up to 15% of some Swedish communities. The midwives almost never deal with it and had we known about it before I had gotten pregnant, I would have been with a high risk doctor and VERY closely monitored throughout this whole pregnancy.

The concern is that I'm at much higher risk for blood clots - Deep venous thrombosis in my leg, Pulmonary Embolism in my lung, or an Ischemic Stroke caused by a blood clot in the brain.

If that wasn't fun enough, I'm also at risk for a blood clot in the placenta or cord which would probably be fatal for the baby.

I should have been on blood thinners for the duration of the pregnancy, I should have been getting weekly Non Stress Tests, I should have been meeting with a perinatologist and hematologist on a consistent basis. But none of that happened because my aunt failed to share this information with the rest of the family when they found out THREE YEARS AGO.

Can you tell I'm a little upset?
I'm not.

To say I was a little upset would be the understatement of the century.
I'm pissed.

This condition put me at extremely high risk for a miscarriage.
Stillbirth is still a huge concern.
and had I had a c-section without knowing about this condition, it could have had serious complications.

They probably won't let me go past 41 weeks, due to concern for the placenta.
I can't go on most birth control options because it raises my risk of blood clots 35 times.
and I'll be on blood thinners for 6 months after her birth.

Don't get me wrong. I'm thankful that I know NOW before anything bad happened, but I just find it hard to believe that they didn't think I should know about this family condition the second after they found out. Since I tested positive, that means my father also has it.

I'm upset that he had a heart attack and they still didn't mention it.
I'm upset that they put me at risk when I was on birth control before I got pregnant.
I'm upset that they let me go 8 months into my pregnancy without telling me.

But I find it unforgivable that they knowingly put my baby at risk.


I had a minimal relationship with them before,
but now I want nothing to do with them.

3 comments:

  1. I can't believe they didn't tell you! That is such a big deal! At least you know now and can learn how to manage it, but I don't blame you for not wanting anything to do with them. Xoxo

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