I apologize in advance for what is going to be a boring medical jargon-filled post. My doctor called me yesterday with the results of all the blood work they did at my postpartum appointment a few weeks ago. If you recall, your autopsy determined that you were a perfectly healthy little girl and that you most likely died when blood clots formed in all three chambers of your umbilical cord. The initial blood work they did right after I delivered you came back negative for all the common blood clotting disorders, but after running some more tests, they've determined that I do, in fact, have a couple rare disorders. If I remember correctly (I've only talked to my doctor about these results over the phone so far!), I have two copies of the MTHFR gene mutation and one copy of the PAI-1 mutation. What the heck does that mean, you are probably wondering? Don't ask me! I have googled the crap out of them, and I am still pretty much clueless. :)
From what I do understand, these two "conditions" make me at higher risk of developing blood clots. I have never had any issues with clotting before, and all my blood levels came back normal, so it appears that the MTFHR/PAI-1 disorders "lay low" or are "dormant" most of the time, but decide to wake up and cause all sorts of trouble when I am pregnant. Pregnancy in general puts anyone at a higher risk of having clotting issues, so add that to the fact that I have these two disorders, and you have a recipe for disaster, I guess.
I am kind of relieved to know that there is a fairly clear medical reason for why you died. a) because now that we know I have these disorders, we should be able to treat them and prevent what happened to you from happening to any of your future siblings, and b) because it makes more logical sense to me. It's easier for me to wrap my head around what happened, to be able to say, "okay, I have these rare blood clotting disorders. No one knew I had them (and there was no reason to suspect I might), so I was not treated for them. Because I was not treated for them, they caused clotting in your umbilical cord, which, in turn, made you die." I don't like it, but it does make more sense than saying, "well, my baby just died for no reason," or "my baby died from blood clots, but we have no idea what caused those clots to form."
So where do we go from here? Well, for starters, my doctor told me to start taking Baby Aspirin right away (apparently, taking a low dose of Aspirin helps thin the blood a bit). Once I get pregnant again, I will be put on daily Heparin injections (or Lovenox; I want to ask about the differences), starting around 7-10 weeks. I think I am going to ask for a referral to meet with a high-risk OB Gyn, just to get a second opinion on this "protocol." Then I guess it will be nine months of worrying and hoping and praying that this doesn't happen again, and that I get my living, breathing "take-home" baby at the end.
Like I told Dad yesterday, when I found out I have these gene mutations,"I can't believe it--I'm a mutant! Kind of like one of the X-Men!" I just wish I had a cooler mutant "power." Why couldn't I have the storm-making power, or the power to walk through walls? Or maybe sweet retractable blades coming out of my wrists, like Wolverine? I'm pretty sure the ability to make blood clots that have the power to kill babies is the worst "mutant power" of all time. (Sorry for the horrible X-Men comparison--I'm a bit of a closeted super-hero geek).
If anyone out there in Blog Land has any experience with the MTHFR or PAI-1 disorders, or Heparin/Lovenox injections, I'd love to hear your feedback, advice, or stories (especially if they involve happy endings!)
I'm so sorry, Baby, that Mommy has these crappy disorders that made you die. I promise, if I would have known, I would have done everything in my power to protect you from them. I love you so much, Stevie girl.
Always and forever,
PS. You made your TV debut last night on the 10 O'Clock news! More on that experience later, but for now, here's the video of the news story: http://firstname.lastname@example.org You are famous, baby! :)
3 hours ago