Wednesday, September 19, 2012


I almost made the title of this "the second worst outcome", and I wanted to, but given my current pregnancy drama, didn't want to stress anyone out unnecessarily. So you are welcome! :) As far as I know, I'm fine, baby is fine.Both rounds of steroids are in, 24 hours until they should be fully kicked in, so hopefully the baby's lungs should be good to go, whenever he is born. (Hopefully not until October!) Nothing really new to report except last night my heartburn was so bad it woke me up at 3 am and took a couple hours before I could go back to sleep, and dinner was nothing spicy, so that's erm, sucky, but could be normal. (It is NOT "upper right quadrant" pain, thankfully.)

Anyway. I remember someone, I think probably Brooke , talking with her doctor or someone medical not long after her daughter Eliza was born still, and them saying that losing the baby was the "second worst outcome". And when she questioned that, they either said that the worst outcome was losing the mom and the baby, or possibly just the mom. (Sorry to be vague, my brain isn't working so great at the moment.)

 Obviously, I think losing the baby AND the mom would definitely have to be the worst outcome, losing two lives with one pregnancy. Nobody goes into pregnancy expecting to die, or even thinking that women still die in pregnancy in this day and age, especially not in countries with medical care like we have in the United States. I can see how a doctor might think that losing a mom is the "worst outcome", but from a mom perspective, I'd say losing a baby is the "worst outcome".  I would have gladly traded places if we could. But then Luke wouldn't be here, so in that respect, I'm glad I didn't die.

But I still vividly recall a medical professional trying to comfort me in the hospital after they told me we had to deliver and Olivia was most likely not going to survive," You are young. You have family. You can go on and have other babies". Really, not that comforting or helpful in that particular moment, though I know they meant well and were trying to save my life at the time. But all I wanted in that moment was THAT baby, our baby girl, the one who was still inside me at that moment, moving around, but so small I couldn't yet even feel her, even if her survival meant I had to trade my life for hers. I knew even then that they couldn't promise I would ever get pregnant again, or that we would ever have a healthy living child, or that having a living child would just make up for the one that we lost. (It doesn't "make up for it", but I am glad, now, to still be alive so that he can be here.)

Anyway, apologies for rambling. What I am getting at that even as recently as this month, women in the United States are dying from HELLP syndrome and preeclampsia, sometimes their babies survive (usually, in these cases, it seems like the baby does survive), sometimes they are both lost. As sad as that idea is, for a baby to be motherless and a father widowed in what should be the happiest time of their lives, it's worse when you see the faces...the young, healthy women glowing with pregnancy and glowing holding their new baby, only to die soon after.

Even though we lost so, so much because of HELLP, it could have been even worse, which was impossible to think at the time, almost 3 years ago. But now, I know I am lucky to be here. These stories of women dying could have easily been me. If we hadn't gone to the hospital when we did. If they had sent me home when they initially found almost nothing wrong. (My initial labs showed my liver enzymes just "slightly elevated" with everything else totally normal. They thought my liver enzymes may have been elevated from gallstones...They kept me anyway. Six hours later, my liver enzymes more than doubled, and my platelets dropped by 100,000. I continued getting worse over the next two days before things finally started getting better. My platelets went from 250,000 upon admission (normal) to 40,000 at the worst (the worst category of HELLP, "class I", which is 50,000 and lower), in a matter of a couple days. Even as my labs got worse, I didn't feel any worse. These stories most certainly could have been me.

I am at higher risk than most to develop HELLP again. We can't say for certain that this is where it's going, yet, but a lot of the symptoms I am having are all too familiar. This is why I got the steroids now, in case we need to deliver soon.  And this is why I'm on a pretty short leash as far as how long this pregnancy will go. Since my blood pressure barely acted up last time, it may not act up again this time. (I suspect if I look at my records closely, it was only high when we were in conversations about Olivia dying, etc.) , there were one or two barely elevated readings over the entire week+ that I was hospitalized. I don't really like how my symptoms...the swelling, the heartburn, just feeling off, are seeming to be progressing and constant. It is impossible to predict though, how much longer we have left. On Friday, I will be 32 weeks. Just one day, one week, at a time, at this point.

I came across this video today from a friend on Facebook, it is not to ask for donations, but simply to put a face behind one of the stories and spread more information and awareness about HELLP syndrome. September seems like it is a bad month for HELLP especially, though maybe I'm biased because that's when I got sick and diagnosed with Olivia. At the beginning of the month, on the PreEclampsia Foundation, a bereaved mother wrote about her daughter who died from HELLP 4 days after delivering her baby boy a month early. (The video below is not the same story, it has been on YouTube for 3 years, but both women who died were young and healthy and in the hospital when they died.) Like preeclampsia, there is no "cure" for HELLP besides delivery, and often it gets worse after delivery before it gets better (it got worse in my case as well). Sometimes (usually) HELLP presents first as preeclampsia, with protein in the urine and elevated blood pressure, and as preeclampsia gets worse, it can develop into HELLP, with red blood cells breaking down (Hemolysis), elevated liver enzymes (EL), and lowered platelet count. (LP). It basically attacks the organs and blood of the woman.  Sometimes women are like me, and don't show they typical preeclampsia symptoms while going directly to HELLP. (In my case, swelling and severe upper right quadrant pain...around my rib cage/bra strap/back on my right side especially...pain that came and went for WEEKS...were my telltale symptoms.) It typically doesn't happen until the third trimester, but can happen (rarely) as early as 18+ weeks. It most commonly occurs in first pregnancies, when women are the most vulnerable because they don't know what is "normal" discomfort in pregnancy and what is not. (I even posted on internet pregnancy message boards about my rib cage pain, and was reassured it was normal by everyone.)

Here is someone else's HELLP story, with some good medical information in there as well.


Addi's mom said...

That video is so sad the fact that you are going through this is beyond unfair. I'm just hoping that things start to go your way for once. Ugh. I hadn't heard of HELLP until becoming a card carrying member of this BLM club. It's just another scare factor on the very long list :(

Brooke said...

Oh my gosh, Angie. I'd heard that delivering the baby is the only cure for HELLP, but I didn't realize that it wasn't an automatic fix... that the mom could still die. (Still trying to be naive, I guess).

Yes, I think my doctor meant that my death would have been the worst outcome, but you're right. I would have traded my life for Eliza's, except where would that leave David... and Caroline?

Hugs to you. I have to admit that your heartburn and swelling reports have me worried. I know that you are totally tuned in to what's going on in your body, and that your doctors are being hypervigilant, but it's still scary. C'mon October...

Kim said...

So heartbreaking and I'm sure this is so difficult for you to see at this time too. I didn't have any symptoms of HELLP. Mine were mostly preeclampsia symptoms, but when my platelets weren't recovering after I delivered they checked my liver enzymes again and they were up. I hope you can hold out until October!

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