Wednesday, July 15, 2009

Genetic Fail.

Writers note...you can find the update to this story here. Good update. :)

When you lose a pregnancy late (meaning, when you lose your child) do you know how much blood they take from you?

31. That's the number of tubes of blood I had to fill before I was even admitted to the hospital. Yes, 31 tubes. I thought I would need a transfusion. I also gave several others while there & again right before I left because they kept coming up with more things they should test me for. As someone who cringes anytime blood or needles are mentioned, it sucked. I was told in advance that while some of the test will be done in the hospital, some have to be sent out & would take several weeks.

Well, several weeks passed & no one ever contacted me. No news is goods news usually, but I don't really trust that line of thought anymore so Monday I called the doctors office myself since my midwife hadn't contacted me in about a month to ask about my results. A lady checks & says everything is back in. I say great, I would like to know them. She then tells me no, I can't.

She goes into some crap about how if I know what the name of the test are she can tell me, but she can't just go over them with me. I say fine & ask how I can just get my own copy. She tells me I have to sign a release then pay for copies. Of course it's not as easy as it sounds really. I have to sign a release, then wait several buisness days for it to be "processed" before returning to the office & picking them up 45 minutes away from my house. No, they can't mail them or fax them, they can only give them to me in person after checking my ID. Fabulous, I think.

Of course I need these results, so I don't try to fight the system. Funny enough, at 10pm Monday night my midwife calls & tells me "Oh, your results are in & I spoke to the doctor today to have him explain everything to me!"

Is it just me, or isn't it odd she calls me the same night I called wanting my results?

Anyway, I call her back & of course she's on the road & her phone is breaking up. But it's finally confirmed that there is a chance I killed Joel.

Isn't that fucking lovely?

I have "genetic mutations." One of which is pretty rare, like only 1% of people have the form of it that I have. You'd think I'd play the lotto more with my odds. But there are 4 things that are above the normal range, which means I have mutations of those "factors" & there is something else I also came up with as having a mutation of part of one gene (there are various parts of one gene that can be mutated).

So what does this mean?

My midwife doesn't really know. She fully admits this is totally over her head & that the OB didn't really help her to understand much of anything. I google these things & I don't understand but every other word. The words I do understand aren't good though...down syndrome, spina bifida, clift lip, clots, misscarriage, my old favorite of "fetal demise" & my new favorite "poor pregnancy outcome"...things like that. The OB suggested Adam get tested for these things as well so we can see if he is a genetic mess, too. If he is, our odds go up for something bad happening again if we have another child. Of course, my odds are automatically set at 50-50 now according to my midwife since the Joel situation. And as I said, it's all confusing & I really don't get all of it.

But here is what I gather from my research & my midwifes limited ability to explain things to me: some of the things I tested elevated for can cause problems with development of the baby. This can be helped by taking medications, including large amounts of folic acid along with things to help my body absorb it. Of course, the odds of the baby having something occur defect wise basically depends on what my numbers are &, again, what numbers Adam may have. My numbers may be low enough to make it unlikely & not many precautions will have to be taken. But if my numbers are too high or if Adam also carries high numbers, well, they makes the odds of something higher obviously & more effort will need to be made to try to prevent any defects if possible, as well as monitering for possible defects.

Defects...as lovely as the word "demise."

Of could it gets more fun! Some of the things I test for also means I'm more likely to have clots, which in turn can cause miscarriage & "poor pregnancy outcome." This, too, can be treated by blood thinners. Again, depending on my numbers it could mean something as simple as an asprin or as thrilling as large daily injections into my chubby belly of blood thiners. Cause, you know, I love needles so very much & there is nothing more I'd enjoy in the world than injecting myself every single day for 9 months or longer.

Mind you, none of this really tells us anything. Doesn't mean any of this happened with Joel, it just means that it's possible.

So now I get to live with the whole "I may have killed the baby" thing, as well as the thought of "I could kill others in the future." It's a fun place to be in, let me tell you.

Now what? Well, we get Adam's blood tested to find out if he is a mutant as well. Finally, blood taken that doesn't involve my veins. Even if he isn't, we are then sent to someone who practices in genetics who will sit down with us & give us odds on this & that happening in the future. I'm not sure if my midwife was told anything by the OB, but she did make a point to tell me "before you decide on having more children, you should see what you're told to see if you want to take any of those chances." This could just be a comment, or it could be that she was told some possible odds that weren't that great by the OB but just doesn't want to say as neither of them are experts when it comes to this issue. After that, I guess I get to see someone else if we decide to try this again to see if I should start on preventive measures before I even try to get pregnant again. But no matter what, I'll never be a boing pregnant woman again, I'll get the joy of being considered "high risk" which means more visits, more ultrasounds, & depending on how things go during the pregnancy an early delivery. How early depends on what happens during the pregnancy, but around 38 weeks is reccomended even if things go smootly. Which is fine with me after my last pregnancy that lasted to 40 weeks & we all know about that outcome.

This of course leave me with all sorts of thoughts. And while some are amusing to me, like "will I look like a drug addict with all these needles around?", at the end of the day I wonder if, depending on the odds of "defects" is it really fair to have another child? I'm selfish & want what I want when I want it, but even I have my limits. So I guess we wait & see what happens & hope for the best. But even my best option sucks in this situation.

I have mentioned I love needles, right?

Oh yeah, & if you're on blood thinners you can't have an epidural from what I've seen. The only needle I want for an induction & I can't have it. Fabulous.

But everyone feel special. You can now tell everyone you know that you know a real live mutant! And she blogs.

And let's not forget we get told this AFTER we pay to book that August 4th appointment for that pesky reversal surgery for Adam. But I'll let him share those facts for you. His testicals, he can talk about them. I'll stick my my mutant genes.

But no one tell my inlaws about this whole mutant status. It's bad enough they think I've ruined their son, they really don't need to know that I've offically be told I'm a mutant, which to them would just reassure them that they are right when they say something isn't normal about me. I can't give them that joy.

2 comments:

  1. Nothing is ever just easy, is it? I think that is all I can say.

    ReplyDelete
  2. I know this is an older post but I am just getting caught up lol. My hubby is a Mutant too!! Maybe you guys can start your own X-Men. :)

    ReplyDelete

LinkWithin

Related Posts with Thumbnails