There Aren't Words

Except this could have been me, and please--prayers for the families.

Please educate everyone you know about preeclampsia and HELLP syndrome and the symptoms; when caught earlier, lives can be saved.

I missed blog for choice day on Monday but this story reminds of how grateful I am that Charlie isn't that father, although of course Charlie would have not only buried his wife but both his children when I had my brush with preeclampsia. Instead, we are a happy family of three with two ghost children hovering about us.

I often forget how close I came to dying on that day. How just like the woman in that story I was blindsided by preeclampsia--even though I had all the early symptoms (pregnancy induced hypertension, excessive fluid in my legs, rapid unexplained weight gain, protein in my urine), my doctors and midwives missed it and any chance of early prevention--and the disease was only 24 hours away from being fatal when I was admitted to the hospital. People, that's just too close.

If you are pregnant, please, I beg you: if you suddenly have a huge weight gain, or you feel like your heart is racing, or your legs are suddenly more swollen than just normal pregnancy (I went up two and half shoe sizes) puffiness--bully your doctor into paying attention. Demand a 24 hour urine collection. Buy your own urine sticks and check for protein. Check your blood pressure, lower your salt intake, ask about taking baby aspirin. Maybe none of these things can prevent preeclampsia, but the evidence says that in about 15-20% of the cases they can prevent it or slow down the progression. If I'd known that when I was pregnant with the twins, well... things would be different.

Man. I'm crying now. I'm going to go hug Tori.

Comments

[Robin]

I was on magnesium after both babies. It's scary stuff.

[Jenni]

Grrrrrrrrrrrrrrrrrrrrrrrrrr.........your story and her story make me SOOOOOOOOOOOOOOOOOOOOOOOO angry. This is quite common, why don't doctors look for it? I guess I was 'lucky' that I was already high risk so they were always convinced I had it and were hypervigilant. Ironically I didn't.

But a friend of mine did have it, not high risk prior. She was telling me all her symptoms and her doctor was totally laid back about it and I think only because it didn't come on as fast as it can she and her daughter were ok.

Dammit PE isn't rare one in a million thing?! Any doctor or midwife that doesn't pick up on it is a MORON. I had protein screens from my 1st OB/Gyn visits and this is standard there. OK I will shut up because I am just ranting, but I think this is a symptom of the 'drive through McMedicine' in this country. There isn't enough time spent on the patient because it's all about seeing as many as they can to make the $$$$$!

Of course not all are that way, but many are. Rant over.

[kheatherg]

That story made me sad.

Thanks for making awareness your priority with this post.

[birdie]

HUGS.

[Sarah]

I saw that story this morning and almost e-mailed you the link, but then decided I didn't want to be the reminder. I should have gone with my instinct that says you would have used it to educate people. You are awesome.

Reading that story also brought me right back to those couple of days and how fucking scared I was; especially having to be at work when you had the termination...petrified out of my mind that Charlie was going to call and say you were gone. I've never, ever been so scared in my life. I hope I'm never that scared again.

I love you.

[curiousgyrl]

How awful.

[gillian]

same thing happened here in Michigan..mom of triplets died after birth..heartbreaking!

[Ninotchka]

Wow. So sad. I'm sorry this hits so close to home but I admire your resolve to get the word out there. Knowledge is power, right? :::hugs:::

[Dea]

that's so sad, heart breaking sad. I had a pre-e scare this pregnancy and I had every test in the book thrown at me. And the whole thing was because my at home cuff was giving me bad readings and the nurse at the office used the wrong sized cuff on me to start, so everything was artifically elevated.
For much of the time I was waiting on tests, or waiting on my doctor to try and figure out what was going on and why I was getting such high readings I thought of you. I was so scared.
Eventually after peeing in a jug and many needle pricks I was told I don't have pre-e. We bought a better cuff and I'm okay.
But it's so scary, however on the other hand I had a clue of what was happening, and I knew what it was. I knew because I learned about it here.
thanks.

[KLynn]

Delurking. There, but for the grace of G-d, go I. I had pre-e and HELLP...twice. First time, I was 21 years old and didn't know what the heck was going on. It was a miracle that they caught it in time, and we both made it. The OB that delivered was showing me off to the residents/interns as "the HELLP mom who lived". The second time, 11 years later, the damn hospital wouldn't listen to me as I told them over the course of a week and several L&D trips, that it was happening again. Finally it showed up in the bloodwork, and they admitted me and did a C-section. Both my kids were 3lbs 9oz and 3lbs 8oz. Both spent almost a month in the NICU. It breaks my heart to see that story of a mom who didn't make it. I had my tubes tied (essure) after my youngest. I couldn't risk my health again when I have 2 healthy kids to take care of. Thank you Cecily for bringing this up. You might just save a life.

[Ruth]

(((HUGS)))

[Denise]

I got this link in email too and my heart just fell. There were two women who gave birth last month who also died from PE complications.

[BrooklynGirl]

You found the right words.

Give your girl a big hug. And one for yourself.

[JuliaKB]

A very sad and scary story.
And I remember those days, Cecily. The thing is, though, I feel sad when I think of that time. And then I feel angry because I always remember that after that trolls came here to hound you, and we had to chase them off. The heartlessness of some people never ceases to amaze me.

[Lis Garrett]

My sister developed preeclampsia, and things were touch and go when she had to deliver her 1st 4 weeks early. Her two other pregnancies were harsh and required almost constant bedrest, strict diet, urine sticks, and pressure monitoring. I may have had to deal with hyperemesis twice, but preeclampsia is just downright scary. Thank you for posting about this.

My heart goes out to that father and his girls (and to you).

[MelG-F]

Amen. I am a HELLP Syndrome survivor myself. My husband was told to prepare himself for my death. After three operations over three days, my liver stopped bleeding, and both my daughter and I recovered fully.

That was almost six years ago. And right now, I'm staring into the big blue eyes of my four-month old son, delivered five weeks early when my blood pressure spiked, but I escaped the clutches of preeclampsia and HELLP.

I attribute it to my viligance in checking my blood pressure and protein levels -- and my doctors' viligance in treating me. I tested positive for the MTHFR gene mutation, after another doctor told me I was an Internet crazy for even asking for the test. But I was placed on a folic acid and baby aspirin regimine that I know contributed to a successful pregnancy.

[dee]

This is tragic. I will keep them in my thoughts.

So much for the "wisdom" of Bill O'Reilly. Isn't he the asshat who said a mother's life could never be in danger due to pregnancy complications? Un-fucking-believable that some people just refuse to get it.

[AmyinMotown]

Thank you for posting this, Cecily. It's horrifying to think two of he most amazing women in the infertility blogworld, you and Julie, could have been just gone. So sad for the families.

[Janice]

A few years ago I almost lost my life long best friend and her son to preeclampsia. Every woman of child bearing age needs to know the symptoms, and how to make herself HEARD by the healthcare profession. We need to beg,plead, scream,or,yell if that's what it takes..We and our children are worth it!
So glad you and Tori made it through Cecily, and my heart breaks at the thought of the loss of your precious boys.

[Caroline]

I also had pre-clampsia and HELP syndrome with my twins - luckily I had Dr's who caught it quickly. Thanks for this post - I think more women need to be made aware of this!

[Marianne]

How sad and frightening. I can say from experience that sometimes, there are no symptoms. Even when the doctors are looking for it, it can show up out of nowhere. I had pre-e with both viable pregnancies and delivered my little girls 12 weeks and 10 weeks premature, respectively. In both cases, my first symptom was labor. There was nothing before that for my doctor to spot. No protein, no high BP, even a perinatologist doing specialized ultrasounds with my second daughter, didn't see it until I went into labor. It wasn't for a lack of trying. It just wasn't there, and then it was. It's frightening how fast it can develop.
We decided, with much prodding from my doctor, to call our family complete now, despite my desire for a third child. I still get a pang for another, but stories like this remind me of how lucky I am, and how foolish and selfish I would be to knowingly put myself in that position again. My heart breaks for the babies and the family.

[Anne]

Cec hope it helps you to know that helped this life. High BP numbers during my 7th month triggered the first of two 24 hour urine collections, twice daily BP monitoring, lower salt and no caffeine intake, and I feel brought me several weeks until I ultimately ended up with an induction and C-section related to pre-eclampsia. My OB caught things in time and was proactive but it sure helped that I had been on the lookout for pre-elampsia after reading your blog. I really feel like I was aware in a way I never been before and as a result I took a more proactive role my own health in a way I don’t think I would have before reading your story. So a big thank you and I try my best to pay it forward.

[Chickenpig]

All I can say is thank you for this post. I am going to take all of what you said to heart and mind. I was very careful with my twin pregnancy, and I know I was carefully watched, but with this one being a singleton I've had a far more relaxed attitude, and it isn't wise.

I am also very thankful you're here. I can't say that I really know you as a person, but from what I've read of your blog, you're a very cool person who I would very much like to know. I'm thankful that you were alive to give birth to Tori, because she is amazing and I think the world is a brighter place with her in it. I am terribly sorry for your loss, but you are still here, and for that, I am glad.

[Foster]

Thanks for the reminder and the list of symptoms. As a pregnant reader of your blog (and Julias, as she had hellp), I am, sadly, aware of the consequences of pe. Excellent reminder that you were not even as far along as I am and developed it.

[Kristin]

I think one of the scariest parts of PE is how sneaky it can be. So I'll add to the voices and say, trust your gut: if you just don't feel right, listen to yourself. Me, I was lucky: my hypertension came on relatively slowly...except the day I went for a regular check-up and ended up going home to call my boss to say I had to leave work and go on bedrest. The scary thing there was that I would have had no idea. My first clue was when the nurse didn't tell me my BP like she usually did after taking it. And then after doing my exam, the midwife sat down in her chair, raised an eyebrow at me and asked, "So how do you feel? Do you have a headache?" I said, "No - should I?" And she said, "Well, your blood pressure is blah de blah" and I just about fell off the table. Bedrest (and/or the grace of God) kept things under control for five more weeks; our big challenge was sifting out what was just my underlying hypertension and what was incipient PE - which became clear at my 39 week check, when my protein was up and my bloodwork came back. Even then, I had time to call DH at work, time to call my mom, time to go calmly to the midwives' office to debrief before going to the hospital to be induced, time even to turn off the pit and rest for the night when things didn't progress and labor the next day. So, I was lucky -- and I had been watched like a hawk from the moment I walked in the office with a positive pregnancy test and a history of primary hypertension.

As it was, it was a head game. I checked my blood pressure at home every day, until that started making it go up. Everything went OK in the end -- but when I think about how lousy I felt, I realize how sick I eventually was getting as I labored. And the way labor went...if c-sections weren't an option, neither the Boy nor I would be here.

And recently, when my pregnant sister talked about feeling a certain way, and wondered if her ankles looked puffy, I took her aside and tried to think how to walk the line between scaring her unnecessarily and saying, "Don't wait, don't doubt yourself, don't wait until your next check if your ankles don't look better after you sleep tonight, don't let them put you off if you don't feel right..." etc. I wish I could explain to her the way I felt -- which might just be normal pregnancy fatigue, but somehow now I'm not sure -- because in retrospect, it was tired like no other kind of tired feels. If we ever do try for a sibling for the Boy, I'll be very curious to see if that's just normal, or if that indescribable feeling was actually the beginnings of things creeping downhill.

Oy. What a brave post for you to write. I'm sorry for your terrible loss, but I'm so glad we still have you in the world.