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Re: being vigilant helps...right?

Posted: Wed Jun 13, 2012 09:11 am
by caryn ... -mortality

Weeks added, "The data clearly suggest a connection between knowledge and outcomes. It is the Preeclampsia Foundation’s position that every pregnant woman should receive detailed information about preeclampsia and its symptoms; it can literally be a matter of life and death for many babies. Information can be provided in an easy-to-understand manner without creating anxiety. It’s one of the simplest interventions that can improve health outcomes for preeclampsia." She also noted, "While this study looked at infant health and outcomes, we cannot lose sight of the fact that too many women also die as a result of preeclampsia-related complications."

(The quote's from Leslie Weeks, who lost her first to HELLP, acted as the PF Board's Chair for years, and who's heading up this year's Saving Grace near Mobile, AL on October 26th 2012.)

And the mods at the forum LOVE NUMBERS. We want to say true stuff and why we think *the way that the world is* actually justifies our claims. If you go check up on what we say, you should be able to find good-quality scientific evidence supporting it. :)

Re: being vigilant helps...right?

Posted: Tue Jun 12, 2012 09:58 pm
by kat82
Many thanks to all of you. This is very encouraging. I forgot about the steroids...that makes a lot of sense. I had no idea they were worth an extra week. That's fantastic. (One of the things I have found really helpful in these forums is the willingness to mention quantities and statistics! Nowhere else did I read, for example, the stat that women with chronic hypertension have a 25% risk of imposed preeclampsia.)

Caryn, if you happen to dig up a link to the study, I would love to read about it.

Re: being vigilant helps...right?

Posted: Tue Jun 12, 2012 05:02 pm
by JB
It has helped me a lot, I think. At the very least it has given me something to do (checking my pressures, getting NSTs and AFIs, etc.) so I don't feel completely helpless. I really think that has helped me keep my stress levels lowered. I was lucky last time that my PE was caught at my monthly exam, because I barely had enough time to get the 48 hours of steroid shots before I delivered. I had ignored a lot of my symptoms for a couple of weeks because I thought they were just regular pregnancy stuff (heartburn, swollen feet, headaches). This time I am so much more aware of every little thing and have not gone more than two weeks without an appointment, so I know that if I start to develop PE again it would be caught much more quickly.

Re: being vigilant helps...right?

Posted: Tue Jun 12, 2012 04:31 pm
by lemons
The benefits to baby from receiving antenatal steroids are huge. They accelerate maturity, which is especially important for the brain, lungs and intestines. These organs are associated with three of the major complications that lead to both mortality and morbidity of premature babies- intraventricular hemorrhage (IVH), respiratory distress syndrome (RDS), and necrotizing enterocolitis (NEC) . My physician told me that the full dose of steroids was akin to baby being in utero for an extra week! And when you are hoping for just one more day, that is huge. But to get the full effect of the steroids, they must be given at least 48 and 24 hours prior to delivery. This may not sound like a long time, but when talking about PE and HELLP, it can be the difference between life and death for both mom and baby. So early detection of PE/HELLP can mean the opportunity to get the steroids.

Re: being vigilant helps...right?

Posted: Tue Jun 12, 2012 02:31 pm
by alexis
Hi Kat,

I also have chronic hypertension. In my first pregnancy I was inadequately monitored and developed severe preeclampsia. By the time it was caught, I needed an emergency C-section.

For my second, I was medicated and heavily monitored. I felt like an egg, and I worried the entire pregnancy that something would go wrong, but ultimately, it was reassuring to know that if anything did happen, it would be discovered early and delivery could (hopefully) be well timed and less frantic.

I can say that personally, even if I got a healthy baby both ways (which I did) the feeling of security that I had with my second pregnancy was invaluable. It may not lead to directly improved outcomes (though fewer panicked emergencies are good!) but ultimately, all that stress was worth it, even though nothing went wrong in the end.

Re: being vigilant helps...right?

Posted: Tue Jun 12, 2012 01:17 pm
by caryn
It totally helps. We did a study a few years back that showed a vastly lower incidence of perinatal mortality in a population that knew the signs and symptoms compared to a population that did not. Since we have no therapies, yet, broad awareness and research (into both bench-to-bedside therapies and basic mechanisms) are where we put our non-profit efforts.

I am so glad to hear the forum has been helpful for you. I'll see if I can find a link to that study.

being vigilant helps...right?

Posted: Tue Jun 12, 2012 11:00 am
by kat82
Hi all,

First, I would like to thank you for maintaining this incredibly helpful and informative forum. I have learned a ton from it.

I am writing because I am feeling a little discouraged. I have chronic hypertension and am now nearly 27 weeks pregnant. My BP has been great (on medication) throughout my pregnancy, but I know even if nothing is wrong it is likely to go up a little in the coming weeks. I am thankful, though, that that hasn't happened yet.

Throughout my pregnancy everyone has told me to make sure I monitor my BP closely, and I have. I have read about the signs and symptoms of preeclampsia and would certainly seek medical attention at the first sign of something wrong. I have encountered so many heartbreaking stories on this forum and elsewhere of mothers with PE or PIH losing their babies, and of course I am terrified of the same thing happening to me and would like to prevent it in any way I can. Since there is little evidence (from what I have read) that things like diet affect PE risk, I have assumed that my best chance if something does go wrong is to be well educated and well prepared.

But, will that really help? Sometimes it feels as though, with a disease that can apparently be so unpredictable and whose only cure is to have the baby, even "catching it early" may not be associated with better outcomes. Or am I wrong?

Surely at least one way it might help to be vigilant is that things like placental abruption can become deadly in a matter of hours, so being aware of the situation ASAP offers the best chance for survival? Is there anything else?
Maybe being educated about how urgent a situation PE is can help a mother advocate for herself if her doctor is not taking quick enough action? I just don't believe my doctor would not respond appropriately if something were wrong...

Just questioning whether the effort I put in to monitoring and educating myself is really worth the anxiety it causes, or whether it would be better to just accept that nothing I can do will really affect my outcomes in any way, and therefore not think, worry, or learn more about my risk. I'm sorry if I sound cynical...I would really like to know what you all think. What, really, are the benefits of being well prepared and well educated?