Tuesday, 15 April 2014

A Diagnosis, After All This Time

When my son died and was born they performed an autopsy. When the report came back the results were somewhat inconclusive, you can read about all that here if you want. It's painful for me to click back there and read just how broken I was back then, but I digress.

Anyway, the report basically said that the placenta failed. It was attacked by an infection or virus of unknown origin. My son was tested and I was tested and no infection or virus was ever found. The conclusion at the time was that it was a fluke and not something that could happen again.

I entered my pregnancy with Frostina with LOTS of fear and trepidation. I was worried that something would go wrong again, because that was all I knew. But I didn't worry that the exact same thing could happen, because I had been told specifically that it wouldn't.

So you will imagine my surprise when the exact same thing did happen, only this time the outcome wasn't fatal. You can read all the details here if you like. In a nutshell, Frostina's placenta had degraded as well and her fluid level was very very low on delivery day. My doctor surmised that the "infection or virus" was in fact an auto immune response by my body to the pregnancy. In essence, my body attacks pregnancies like they are an unwanted foreign body.

It was quite a bitter pill to swallow, to know that my body killed my son and was trying to kill my daughter. But at least the mystery was finally solved. At least I knew it wasn't just a fluke. It was a real thing that I could watch out for and hopefully prevent in future pregnancies.

I relayed all of this "history" to my new and super awesome perinatologist who I met with last week. If you're scratching your head at this point, I apologize for not writing about all of this before but life has been super crazy around here. Anyway, when I mentioned the auto immune part to him he ordered a bunch of tests to see if we could identify what it was. Some pretty scary test names were rattled off including lupus which really freaked me out.

Yesterday I got a call from the doctor himself, so I knew it wasn't an "all clear" call because those are normally made by the nurses in the office. It turns out that I don't have any of the super scary auto immune disorders like lupus which is a huge relief. But I did have one test that came back positive. I won't put the name of it here because it has a super medical name and even when you try to google it you don't get a good definition. Plus I try to steer away from all the medical lingo here on the blog because I'm no doctor and I don't want people looking for real medical advice to be directed here.

The way the doctor explained it to me, this particular antibody that I have can cause increased clotting. My levels aren't super high so it hasn't caused any clotting for me, but the blood vessels that feed the placenta are very small. He explained that it's possible that these antibodies could have caused tiny clots in the placenta that would have impeded blood flow and may very well be the cause of the death of my son and the issues with Frostina's last week in-utero. Of course he says he can't be 100% sure, but he thinks it's more likely than not.

So starting today I have to take a small dose of heparin (which is a blood thinner) each day. It's an injection which I had really hoped I was all done with, but I will do whatever it takes to make sure Baby Olea arrives alive and healthy. As the doctor was telling me about the injections I could tell he was worried that I was afraid of doing them. I reminded him that I had done all of my own IVF injections and if I can do a progesterone in oil jab with a 1 inch needle into my thigh each day, I can certainly do a tiny one in my belly. He laughed and joked that I'm an expert which sadly I am.

So later on this morning I'm off to my new pharmacy to pick up my new set of needles and medication. That's what I get for bragging that I was finally all done injecting myself this pregnancy. I am happy that we have a plan to help keep Baby Olea safe, and I am very impressed with my perinatologist.

After all this time I have an official diagnosis for what caused my son to die. It feels strange. On the one hand it's nice to know finally what happened. But on the other hand it's sad to have confirmation that it's my fault. That for some reason, my body contains antibodies that attack pregnancies. But in the end, it's good to know. It's good to have a diagnosis.

It's too bad a diagnosis can't go back and re-write history.


  1. Our stories are hauntingly familiar. My body too attacks babies during pregnancy, but it goes directly after the baby's red blood cells. I also have to do blood thinners. It sucks knowing that your body is the one that caused his death, but, for me at least, I felt a small sense of relief actually knowing the cause of my daughters death. Keeping you in my thoughts as you continue with your pregnancy.

  2. I'm glad that you have an answer and a plan to keep Baby Olea safe.

  3. I think the guilt is something we never escape. My eyes welled up as I read "it's sad to have confirmation that it's my fault" because of course it's NOT your fault. And yet, I understand that feeling. I told a friend last week that getting past viability is good but also scary "Because now if something goes wrong, that's on me." If only I'd been more vigilant, if only I'd been more knowledgeable the first time... and now I KNOW (well, I don't have a definitive explanation, but I know what to watch out for...). So if something goes wrong, it's my fault. (Again.)

    Glad you have a good doctor and a good plan.

  4. I can relate to this. It is sad to know there is no way to rewrite history, but being able to move forward with pertinent information is a relief. I still don't have concrete evidence about why I lost my twins. We think it was an infection that started early labor but no real answers. Because my next son was born without incident I assume the nightmare of their loss was a fluke. I assume. If I were to somehow get pregnant on my own, I know I would ask for the aspirin and progesterone again to be safe. I pray that you have a wonderfully full term, healthy pregnancy with Olea.

  5. I'm sorry this brings back the bad memories for you, but at least you have some answers now and can move forward in a better place for your unborn child. I also have auto immune issues and when I was pregnant had to take blood thinners and get an injection once a week for eight weeks. The fertility clinic made me me do loads of blood tests that's how they picked it up.

  6. I am just glad you got this information in time to save baby Olea.

    One of the things that was noted vis-a-vis my first pregnancy was that when I delivered, the doc observed that the placenta had aged prematurely.

    Second time around, my other doc doubled my aspirin intake.

    This time too, I am taking two doses of low dose aspirin within a day.

  7. I'm glad you have such a good perinatologist, and that there is something they can do to help keep baby Olea safe. We don't quite know what lead to the loss of our twins, and now I worry that the same might happen again. It must have been so strange and scary to be told it was a fluke, and then to have the same thing happen again with Frostina. I'm so glad you have a plan now, and wish you all the best.