I could’ve been a superhero

The nurse came in backwards, using her rump to bump open the door. As she turned around to greet me, I saw why: both of her hands were full, clutching an alarming number of glass vials. They clinked cheerfully as she deposited them in to a little basket on the counter next to me. There were at least a dozen and they all had my name on them. My palms started to sweat.

“You’re kidding me, right?” I squirmed in the hard plastic chair. “I’m not going to have any blood left in me!”

I don’t do needles well. I mean, judge me if you want, but I’ve never even donated blood. The very thought of it nauseates me. And here I had thought the standard few vials I had taken at the outset of the pregnancy were bad; they had nothing on this.

“You got plenty to spare, sweetie,” the nurse said.

At four months pregnant, I was being tested for a smattering of obscure-sounding disorders and genetic abnormalities that I’d never heard of, and none of which were necessarily indicated by the perfectly healthy baby growing in my belly. No, these were the ghosts of pregnancies past, of those months where cells had joined and multiplied and progressed enough to turn a pee stick pink but never made it much further.

Habitual Aborter, that was what the diagnosis on the paperwork said. Naturally I was highly offended the first time I saw it, until I realized it was simply the clinical term for recurrent miscarriage. You’d think they could come up with a better way of saying it. Oh yes, my bad habits, I had chuckled bitterly. Picking my cuticles, forgetting to replace the toilet paper, and aborting fetuses. 

I closed my eyes as the nurse tightened the elastic band around my arm, my nails digging into my clammy palm as I obediently clenched my fist. I couldn’t bear to watch her stick me. I knew it wouldn’t be painful, but it was just…gross. Needle in my flesh. Ew.

Initially, I had bristled at my doctor’s suggestion that we pursue these blood tests, known as the recurrent loss panel. Why does it matter now? I had asked. I’d just come from my big 20-week ultrasound and seen our perfect little fetus – a girl! – wiggling and kicking away. All her pieces and parts were in their proper places. I didn’t want to revisit the past, those clusters of cells that never made it. I wanted to focus on the one that eventually did.

They just wanted to rule out any possible problems, the doctor had explained. A clotting disorder. It was unlikely, of course. But just in case…

So I had agreed.

As it turned out, the lab nurse was correct and I did, in fact, have plenty to spare. Life went on normally without those dozen vials of blood. A couple of weeks passed. My belly grew rounder; I started to feel the baby thump and kick, hard enough even for my husband to feel it from the outside. We giggled and marveled as I’m sure all first-time parents do at such milestones. I was 25 weeks when I got the call that the labwork was in. At that point, I’d almost forgotten about it.

“There are a couple of things we should discuss,” the doctor began.

That’s not how these conversations start when everything’s fine.

“You have a genetic mutation, heterozygous MTHFR,” he continued.

The what? The motherfucker gene?

“And you have a functional protein-S deficiency.”

A protein deficiency? But I eat lots of protein… 

“Taken on their own, neither of these things would worry me much. But when we look at the whole picture, including your history, I believe it’s possible that you may have a genetic clotting disorder.” He paused, perhaps to give me time to process. I flipped through my copy of the lengthy document provided by the lab, pages of acronyms and unfamiliar terms. Someone had pen-marked each of the offending parties, the motherfucker gene and the delinquent S protein, with a circle and a sloppy asterisk.

Genetic mutation. It was the stuff of comic books and superheroes, of fantasies on the evolution of the human species. As in: somewhere, deep in the bowels of her coding, a switch gets flipped and all of a sudden she can fly! Or regenerate wounded flesh! Or snap pencils with her mind! By comparison, having slightly thicker-than-average blood seemed not only disadvantageous, but downright mundane.

The doctor went on to explain the course of treatment for clotting disorders, which he recommend pursuing as a precautionary measure for the rest of my pregnancy. It was a pros-vs-cons game, of course, but the lineup on one side had some pretty heavy hitters: low birth weight, late-term miscarriage, stillbirth. The opponents were fairly flimsy: bruising easily, inconvenience of dealing with a daily injection of blood-thinning medication….

Of course I would treat it. Even though the treatment would involve needles. It wasn’t even a question. I caught my first glimpse of what parents mean when they say they’d do anything for their kids. I would jab myself with oodles of needles every single day if that’s what my little girl needed to grow properly and come out safely.

Still, it is unsettling to learn that there may be something wrong with you when you feel perfectly fine. I mean…seriously, blood clots? Never crossed my mind. I’m healthy. This pregnancy has been easy and uneventful. I run and I eat my vegetables. How can there be something wrong with the blood that circulates my veins and arteries completely unbeknownst to me?

It seems so nefarious and unfair. But I guess that’s the nature of symptomless diseases.

We still don’t know for sure whether I actually have a disorder. Pregnancy hormones, it seems, can mess with the contents of your blood and make these things difficult to diagnose without a baseline. Next year, after baby’s born and the pregnancy hormones have left my system, I’ll see a hematologist and figure out what’s going on, whether this motherfucker gene and defunct protein thing is for real.

But for now, every night before bed, I close my eyes as my husband sticks me in the side with a thin, inch long needle. It doesn’t actually hurt much, and I can do it myself if I need to, but I prefer not to watch. Old habits die hard.

30 responses to “I could’ve been a superhero

  1. Wishing you a happy and healthy pregnancy!
    My daughter just turned 7 months and due to a clotting disorder I had to give myself injections of lovenox 2 times a day throughout my pregnancy and for 6 weeks postpartum. I had a mostly healthy pregnancy (until the end when I was diagnosed with mild preeclampsia) and delivered via induction due to the pre-e and the clotting disorder. Just wanted to say that more than likely you will be just fine!

  2. woah, i just was hoping you would post and you DID. i can’t imagine how stressful that would be. but the needles will be 1000000% worth it. i hope you are feeling well!! we are just a few weeks apart, right!? and so exciting about GIRL.

  3. Bravo on a wonderfully written post! How funny…my mom came home with 19 vials of lovenox last night. We joked that it sounded like a creature out of a Dr. Suess book.

  4. What a fantastically written entry. OH MY GOD the whole time I was reading I was getting sick with worry that the baby wasn’t OK – so I am really glad that all you have to do is get stuck with needles for a couple of months.

    Enjoy your pregnancy!!

  5. Hi Shelby- It was nice to see a post from you with an update about your preg and as soon as I read about your mutant gene I had to respond because I have the same mutant gene! I am going to email you.

  6. Shelby!! So good to see/read? you. I hope that you have a happy and healthy pregnancy and that all is well otherwise. A little girl – so exciting!!

  7. only you can write a post about pregnancy and needles (I have the same reaction) that I enjoy reading. :)

    sending healthy thoughts your way!

  8. Another victim of Lovenox here, thanks to a clotting disorder (mine almost killed me twice, fwiw, thanks to two blood clots in my lung: the altenative, the shots, is a-okay by me…). Perversely I kind of liked the bruises I got from the shots (and from bumping *anything* while on the blood thinners). They made me feel tough.

    • How scary. I’m glad you’re OK.

      I don’t have any big bruises yet…just little purple polka dots all over my love handles. I like to think of them as adding an extra layer of sexiness to my ever-expanding abdomen. :)

  9. best of luck to you and your motherfucker gene. I wonder if one of my best friends has something similar, based on what I know of her experiences. luckily she now has two healthy children.

  10. I haven’t heard of this disorder. I hope you are right and it’s abnormality due to hormones. Good luck to you and your family!!! xoxoxo

  11. All of those scary injections will seem like a distant dream when you’re cleaning diarrhea shit out of your precious daughter’s vagina at 3 in the morning. XO

    • Nah, my little princess will only shit cotton candy and rainbows. #speshulsnowflake

      But really, the funny part about that is: I have to keep taking them for a few weeks postpartum, so I could actually experience these two things simultaneously! Yay, can’t wait!

  12. Ug! I also hate needles so I’m sorry for you. On the bright side, at least they found out about this so you can treat it & hopefully avoid any complications. Such a well written piece, Shelby. I miss your frequent blogging!

  13. Ahhh I had been wondering how you were doing! It is a curious talent to be able to induce both my laughter (motherfucker gene! ha) and a mild panic attack on behalf of you and your baby in the same blog post. Glad you are both doing well — good luck — thinking of you!!!

  14. Yet again, your honesty and humor make you one of my favorite blogs to read. Thanks for being you. Congrats on having a girl!!

  15. Ah the things we do for our children – even before we actually “meet” them for the first time. Just keep it on the long list of things her prom date absolutely needs to know about her before they leave.

  16. At least if you have to have a genetic mutation, it’s the one with the Best Name Ever.

  17. So sorry you’re having to deal with this … keeping my fingers crossed for you! And remember that it will all be worth it soon!

  18. Hi Shelby. I laughed myself silly through this post….not at the stress you are under, but just the way you told the story. It is not unusual to not like needles…I gave Bill his diabetic shots for a couple of years and then cut him loose on his own. LOL I say a prayer for you every day and I am sure your little girl will be as healthy and sweet as you. HUGS to you and Drew.

  19. Hey. I am not exactly sure what to say about this other than I would be more than willing to talk to you about it if you like. I am worried about indication for blood thinners given the history you reported, but, of course, it is always difficult to know the whole story.

  20. What a well written post. I am glad everyone is doing well. One of my friends had a blood clot disorder and had to do a similar thing. I don’t know all the details, but they just had to take some extra precautions when it got closer to her due date. Her and her son are healthy as can be.

    Little lady is going to be here soon! Your #motherrunner days are almost here :)

  21. I hope the rest of your pregnancy is uneventful and boring in the good way.

    It’s kinda crazy/scary how something that was never an issue pre-pregnancy or maybe just an inconvenience gets much more serious thanks to growing a fetus and all those hormones.

  22. I’m glad I’m not the only one who calls it the motherfucker gene! You’re awesome, Shelby.

  23. How many miscarriages did you have?
    I have twice now turned a stick pink, but then never made it to week 6.

    We are meeting with a specialist in about 2 weeks.

    Did you have to do anything differently to get this far along successfully?