Sunday, October 4, 2009

RA and pregnancy

Recent information that is to be published in Annuals of Rheumatic Disease points to poor outcomes in pregnancy for women with R.A. -- pre-eclampsia, low birth weight, etc.

Interesting. Troubling if you're 33 and suddenly realizing that the choice on whether or not to have children may not be a choice after all. My immune system may have already made it for me.

When my grandmother, mother, cousin, and I traveled to England in September, I didn't take either of my injectable medications because getting them on and off airplanes were more trouble that they were worth for a 9 day trip, especially since the Enbrel needs refrigeration. When I got back, I quietly stopped taking the methotrexate. Methotrexate, just so you know, is a pregnancy class X drug. They give it to women to help terminate ectopic pregnancies -- it's THAT toxic to a fetus.

Conventional wisdom used to be that a woman needed to be off of methotrexate for 2 years before trying to conceive. I thought about that and decided "No way." I couldn't let myself become that disabled for that long. But now, the Enbrel is working okay and most doctors say 6 months is sufficient. Six months is doable. I think. I hope.

My last methotrexate injection was August 4th.
I need to be off Enbrel for 30 days before trying to conceive, so if I stop that January 4th, I should be cleared for take-off, so to speak, in February.

There are all the bigger issues that come with deciding on whether or not to become a parent. There's the stability and money and career and lifestyle questions (I'm fairly sure that I cannot raise a child on poptarts and Dr. Pepper.) But it's almost as if I'm afraid to think of them because that would be admitting that I'm trying. And that would be setting myself up for what might happen if I find I cannot.

Better then, to take a quasi-scientific interest in drug half lives and metabolic issues than to think about what success or failure might mean.

And if I have this little person, with half my genes, those genes will have RA lurking in the shadows. It's not horrible to have RA. It's not cancer. It's not MS, or muscular dystrophy, or Tay-Sachs, or cystic fibrosis. But to saddle a little person with the possibility -- to knowingly take the risk of passing it on to someone else -- it's a horrible feeling. And although RA isn't genetic in the Mendelian sense, it's well-documented that autoimmune diseases cluster in families and some have genetic basis as well as links to autism.

This is challenging all my feelings about disability and ability. I no longer see disabled children as tragedies -- I have met so many wonderful amazing human beings with all ranges of abilities that I refuse to think there is anything "wrong" with having a child with Angelman, with Down, with cp. I've considered adopting a child with special needs even.

But this is different. It's taking a life that doesn't exist and to knowingly risk inflicting suffering on that life. All I know about that potential human is that he or she might suffer because of my genes. I understand now how terrifying prenatal diagnosis must be to people who are not involved with disabilities and I see how one might equate all disability with suffering. I see how one might be tempted to choose lack of existence over what they see as a painful one, even though I know better intellectually and intuitively, and I have seen every day how those "painful" existences are as joyful or as difficult as anyone else's in the world.

I know better. I know better. I'm going in to school tomorrow to a classful of kids with a variety of different disabilities and I know that their lives are harder than their peers' lives in many ways, but not so hard I would wish for lack of existence as an alternative. There is a stubborn grace to my kids, even the brats -- no, especially the brats -- demonstrate more strength and resilience and humor and humanity than most people ever get to witness. And I have 12 of them waiting for me tomorrow, which will come too soon because I've been up blogging.

Whatever genes I give my kid, if I'm able to have a kid, I hope that he or she gets a fraction of the spirit that the kids in my class have.

Links:
From About.com, which is usually well-researched:
Pregnancy Advice for Women with Arthritis
Women With Lupus And Rheumatoid Arthritis Have Greater Pregnancy Complications

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