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Re: U.S. gets

Posted: Tue May 22, 2012 05:13 pm
by angieb
I know this is a very old discussion, but I remembered it and thought of it today when Mom29 in another discussion pointed out a study from Nov.2011, following the "campaign against premature births" where the rates of NICU admissions decreased, but the rate of stillbirths increased.
CONCLUSION: A policy limiting elective delivery before 39 weeks of gestation was followed by changes in the timing of term deliveries. This was associated with a small reduction in NICU admissions; however, macrosomia and stillbirth increased. ... of.12.aspx I wonder if the March of Dimes is going to reconsider their position if more research like this comes out.

Re : U.S. gets "D" on preterm birth rates

Posted: Tue Nov 24, 2009 04:36 am
by angieb
Thanks for the information, Eleni.

Re : U.S. gets "D" on preterm birth rates

Posted: Mon Nov 23, 2009 12:30 am
by eleni
Sorry to let this thread go so long without commenting. As Sara mentioned, I was traveling on business. There are a number of issues at play here, but I will say that this thread has prompted me to contact MoD to express our concerns (again) and I'll let you know what response we get.

The MoD is on a quest to reduce preterm births and because roughly half of them are from unknown causes, a good deal of the research they fund is to get at the root causes and potential prevention of those "unknowns." Preeclampsia is - at last count - the number one KNOWN cause of preterm birth, around 15%. The March of Dimes does fund *some* research in preeclampsia, recognizing its role in this problem, and was an active participant in a PE workshop at NIH 3 years ago (I was a presenter there on behalf of the PF). I will also find out the current status and amount of that research, relative to the overall pot of money being spent in this area. I believe that if you are donating to them, you should understand how much of your dollar is targeted to the issues you care about.

They also willingly worked with us to ensure the info about PE on their website was accurate and they must still link to our website because our website analytics show redirects from the MoD website. The Preeclampsia Foundation is considered an "alliance" member of the MoD - you can read more about what that means here . We have not formally reviewed their website in well over a year to determine if their PE information is still accurate and we are appropriately referenced. If somebody has some time and would like to help do a quick audit so that we can suggest new edits or additions, we'd be most grateful.

Beyond that, this is indeed a tricky area for them to navigate as we clearly confuse the "preterm delivery is bad" message. As we all know, in preeclampsia and related hypertensive disorders of pregnancy, preterm delivery is sometimes the healthiest option for the mother and even the baby. The challenge is getting a clear diagnosis and being able to accurately predict when delivery should happen to prevent or at least lessen adverse outcomes. A too early or unneccessary delivery can be just as bad as a too late delivery. That said, I hardly think they'd be happy with reducing the preterm birth rate only to have the stillbirth rate shoot up.

We have always contended they should put MORE not less emphasis on preeclampsia if they truly want to improve the lives and health of babies. At least in theory, they have been open to their local chapters working with us to have events and initiatives that include important messages about preeclampsia awareness. We know of one instance where there was poor cooperation around our materials distribution, but don't know if any of our other local volunteers have tried, but failed to engage local MoD chapters. So many of their Ambassador families are victims of preeclampsia, I would hope that they would be open to campaigns that advance the importance of knowing warning signs and diligence around diagnosis.

I'd be interested in anybody's experience at the local level. And if this is a concern for you, I'd also encourage you to politely but clearly approach your local MoD chapter and begin a dialogue about how we can work together for our common interests -- healthy babies!


Re : U.S. gets "D" on preterm birth rates

Posted: Sun Nov 22, 2009 10:35 am
by sarab
Preeclampsia is tricky for the MoD because their mission is to prevent preterm birth, but the only treatment for preeclampsia is delivery - very often preterm. You see where the dilemma lies...

Eleni, our Executive Director, can offer more insight into the PF's relationship with the MoD. She is traveling on business, but has been flagged to this thread.

Re : U.S. gets "D" on preterm birth rates

Posted: Sun Nov 22, 2009 05:55 am
by jules2
I have read the PE causes about 15% of premature births.

My daughter was stillborn; I can hardly blame the hospital for not wanting to deliver her any earlier than necessary when I was only at 26 weeks gestation, but for the rest of my life I will always wonder if she might have been ok had she been delivered a day or two earlier.

Re : U.S. gets "D" on preterm birth rates

Posted: Sun Nov 22, 2009 00:46 am
by angieb
I just skimmed through the actual study and they didn't mention preeclampsia as a cause for pre-term births AT ALL.

I wish we had a thumbs down icon, because I would totally be inserting it here. *thumbs down*

Reading it was actually a complete waste of time, or at least I wasn't impressed.

Re : U.S. gets "D" on preterm birth rates

Posted: Sun Nov 22, 2009 00:30 am
by angieb
This actually makes me really regret donating to them earlier this year. (I feel like I should write a letter asking for my money back and give it to the PF instead, not that they would give it back anyway.) The implication that "better prenatal care" will prevent preeclampsia really made me mad. Since they seem to have all the answers, I sure wish they would enlighten us and our doctors and experts! Grr!

I wonder how misleading their rates really are. I think that Olivia's cause of death on the records was due to extreme prematurity (23 weeks), even though she was only extremely premature because of HELLP, and most likely would have been stillborn in another day or two. But I wonder how many babies like her are going into these prematurity rates that aren't really fixable unless/until we find a cure or prevention for PE/HELLP.

I fear that their big push against prematurity is going to only result in more stillbirths as they make it more difficult for doctors to induce labor prematurely. (I read an article a week or so ago about how hospitals are 'cracking down'.)

The new recs for less pap smears are also part of the attempt to reduce preterm birth. Allegedly more frequent paps= more frequent, possibly unnecessary procedures for abnormal results, which can contribute to preterm birth. I think I'll take the risk of preterm birth vs. cervical cancer, thanks. Although I sure won't be complaining about less paps, I'm not that sure I like the reasoning behind it.

quote:"The driving force behind the change was the numerous studies that show women who are treated for cervical dysplasias are more likely to have a preterm birth," said Waxman, who is a professor at the University of New Mexico in Albuquerque. ... 632&page=1

Re : U.S. gets "D" on preterm birth rates

Posted: Thu Nov 19, 2009 09:49 pm
by tree
I had the same curiosity about the MoD after reading that study. I agree that access to pre-natal care is poor in this country. I disagree with their implication that we could all carry our babies to term if we just saw the doctor enough. I thought they should mention Pre-E as it seems to be a significant cause of premature birth in the US. Seems worth researching...

Re : U.S. gets "D" on preterm birth rates

Posted: Thu Nov 19, 2009 06:52 pm
by jmom08
That was sort of my reaction, too... I guess I was trying to give them the benefit of the doubt, but you're totally right.

I hope it's okay to ask about March of Dimes, I'm just really curious. I get mailings etc from them all the time, but no mention of PE.

Re : U.S. gets "D" on preterm birth rates

Posted: Thu Nov 19, 2009 05:20 pm
by rosalinda
preeclampsia treatable?? really????? (being sarcastic)