are people really this clueless?

[jgrumet]

Okay, I need to rant.

People ask me about Aram and how big he is. My husband LOVES to say ..."Well, not only is he huge for his age- he's also a preemie"...I think it makes him feel like he makes manly boy babies or something.

Anyway, that always leads to the question of why he was early. I don't mind telling people that I had HELLP Syndrome, but I figure they won't know what that is. For the past 15 months this is ALWAYS how the conversation will go:

ME:"He was a little over 6 weeks early because I had HELLP Syndrome...which is basically a very severe form of Preeclampsia"

The Other Person:[lost look on their face]...."what is preeclampsia?"

ME: "oh, it's that condition in pregnancy where your blood pressure gets high, your liver enzymes can get high, your brain can swell, you can have a seizure or a stroke if it goes untreated"

THE OTHER PERSON: "WHAT?! That sounds awful! How scary!...and there is a condition that is worse than that?"

ME: (I explain about hellp and they get even more freaked out)


Okay--so the point of this is ...how they heck do this many people really not know what PE is? I figured no one would know what HELLP is, but it has been over a year of the EXACT SAME conversation with other MOTHERS that have young children. If this disease really afflicts 8% of all pregnancies- shouldn't more women know about this?

The other day I was shocked when I had the same banter with a woman, but she knew what PE was. Turns out she had PE too. I go on to find out she only had one kidney and she was never seen by any high-risk OB and her doctor never suggested she should with her next baby. She is scared out of her mind to have another baby and she was not anticipating any complications with her pregnancy because her doctor never warned her. All he said was she should probably only have two children (this was after she had her son).

[veronica44]

Good question, this is frustrating to me as well. I think with the incidence statistics, everyone getting pregnant should be educated about hypertensive pregnancies and PE. Why don't they teach this stuff in the childbirth classes? Or hand out pamphlets at the beginning of pregnancy?

The other day, I was taking a bus home from the hospital after giving up a 24 hour urine sample (it tested great fortunately). Obviously very pregnant now in the last month. Immediately the bus driver asks me if I plan on delivering the baby in the hospital. Of course my answer is yes. She then proceeds to criticize me for not having a home birth and "doing what is best for the baby". I tell her I have chronic high blood pressure but she is still critical. Unbelievable that a completely uneducated stranger would feel like it is her place to tell me this. Yikes.

And then some people in my extended family just can't seem to understand why I'll most likely be getting induced a couple of weeks early. I told them about the research but they still give the "early induction = always bad" speech. Meanwhile they should be happy for me and the baby that we made it to week 36. Many are not so lucky.

The feeling I get is this: there must be a very vocal group of "natural childbirth" proponents that have convinced everyone that pregnancy is always safe, always no big deal. They convinced the public that doctors are surgery-hungry and money-hungry intervention addicts who will send patients into an "un-natural" and "over-medicalized" childbirth experience for no good reason. I think the natural childbirth movement is all well and good for people with uncomplicated pregnancies, but complications affect a lot of women. The commonly-occurring ones like PE need to be publicized more so that people are aware of the symptoms to look out for. Meanwhile, people need to stop being criticized for choosing a "medicalized" childbirth experience - for many women this is a life saver, not really a choice at all.

[catherine]

This is precisely why we are here :)

It's a joy to know that the two of you, and many others also, are out there doing your part to spread the word. As you can see, it's an uphill battle and who should have more credibility than those who have been through the experience and come out the other side.

So, even when you feel as if your efforts are futile and that nobody seems to be paying attention... we're here busy 'ppreciatin you.

[amanda]

Don't forget that a lot of women still call it toxemia and/or eclampsia (no pre or post)and all they know is that they didn't have it. Also there are so many women that have healthy pregnancies that never even get to the point of discussing complications. For most, the first time they've ever heard of preeclampsia - that is why we try so hard to educate and get the information out in the media.

I truly do think that there are OB's that have never had a preeclampsia patient. Hard to believe but true.

Remember we are the worst of the worst here for the most part - that always keeps it in perspective for me.

[annes]

Yeah, people don't like to scare pregnant ladies. I am embaressed to say that I have been guilty of it myself. We are always trying to find ways to educate and raise awareness so that people know what to look for, and what questions to ask, but when people ask me about my own experiences I always follow-up by telling them that my case was very unusual (which it was), so that they don't get stressed. Being pregnant is supposed to be wonderful, having a baby is what our bodies are "made to do", unfortunately the ladies here have not had that experience.

[jgrumet]

I don't like to scare them either, but they should at the very least know the signs and symptoms to look for at the very start of their pregnancy.

When I tell people what I have I'm always explaining how rare it really is.

Perhaps they don't need to go into detail at the doctors office about all the horrible things that can happen if you do get it...but they should be informing women to look for the signs and to come in right away because it is essential for your health and the baby to get immediate treatment.

[kara]

For those that feel the same as Jamie, the PF has tons of ways you can raise awareness of Preeclampsia and HELLP. Brochure campaign, starting a local group, organizing a booth at a baby fair, and the list goes on. If you have interest in helping the PF please email me at Kara.Boeldt@preeclampsia.org and I'll help you figure out the best activity for your time and abilities.

You can do something to make a change in your community, even with very little time or effort.

If not you, then who? If not now, when?

[hannahsmom]

I think these complications should be discussed at initial OB/pregnancy appointments. My OB with Hannah even knew I had preexisting high blood pressure and told me that he would be seeing me more often, but didn't tell me why. He only told me about it on the day that he diagnosed me with severe "toxemia." If he had given me the warning signs ahead of time, maybe I would have made a visit to his office sooner.

[kbunsey]

And then there are groups and people like The Bradley Method who write in their literature that Toxemia is a condition of improperly nourished women and we need more protein!

I think the baby/pregnancy books and doctor's offices should educate women much EARLIER about Preclampsia - like at 15-16 weeks. How many of us got sick right after 20 weeks? The books don't even mention PE until 28-30something weeks!

Thankfully, a lot of people who know me went on to read about Preeclampsia after I got it - so that was good of them. I too try to educate people whenever I can. There is still that thought hanging around that PE is a first pregnancy complication. And there are other people who seem to think I was insane for getting pregnant again like I was doomed and so I try to educate them of the statistics. My husband gets kind of defensive about our getting pregnant again whenever people either fall silent or make a confused face after telling them what happened to us before. He always says, "We were encouraged to get pregnant again!"

It is sad, We ARE the worst of the worst. :-( I know some of my preggie friends freaked about anything even remotely resembling PE symptoms b/c they know me. I'm sure they may have even told their OBs, "I know this other woman, who..." and that felt crappy to think that my story was THE scary story they worried could happen to them. But on the other hand, if they got good care and attention when they needed it - perhaps it was all for the benefit of others.

I posted the video segment from the Preeclampsia Foundation on my Facebook page and lots of people commented to me on it.

[caryn]

With the "MOAR PROTEEEN!" thing I always want to post this link:

http://icanhascheezburger.com/2007/05/21/cheez/

I mean, seriously.