What I've been working on...

My email to the MOD foundraising director (we've been working together for a few months now). This is in regard to the 2007 Prematurity Summit in Boston and Springfield, Mass that I was invited to:

...I do like the idea of going to Springfield , but I can't deny that sometimes it upsets me the topics that Drs always speak on. The speakers are addressing things that the mothers are doing wrong and how it contributes to prematurity...the importance of healthy lifestyles, impact of age on prematurity, impact of smoking, impact of dental/oral health, impact of obesity and diet, impact of domestic violence and substance abuse. I understand these are very serious problems and I'm sure many women deliver early because of these issues, and this must be stopped and women must be educated.
But what about the thousands of mothers who deliver early and never know why? What about those of us who feel we did everything right but yet our babies didn't get their 40 weeks? I'd love to hear about emerging research that addresses some of suspected causes...undected infection, incompetent cervix (how can we better test for this), risks toIVF babies and multiples, benefits/drawback to a cerclage, etc. Should women carrying multiples have a cerclage put in place even without a history of premature birth? Especially for someone who would like to have more children, I would like to learn more about what I can do to prevent premature birth, and I don't have any of the risk factors most commonly pointed to:obsesity, smoking, drug use, etc.
Through my communication with other preemie mothers I have learned that many people are turned off by the MOD. I couldn't understnad why at first, until they explained that often times they felt the research and education focused on what mothers were doing wrong and there was an element of blame. A lot of mothers I am in contact with never smoked, did drugs, or the like. I understand it is important for the MOD to address these issues because there are plenty of mothers who are unhealthy while pregnant and they need this information and need to understand the possible impact of their actions while pregnant. However, if you ever come across any research that is exploring the less obvious causes of prematuirty, I would definitely be interested...

***Response was great from the Director as always...she forwarded my email to the State Director of Program Services***

His response:

First of all, thanks for your support for the March of Dimes. We appreciate your interest and volunteerism. Patty Kady suggested that I might want to take a moment to clarify the purpose of our Prematurity Summits and speaker topics for 2007. Each year each Chapter sets a theme for their summit and a target audience. The theme is selected and developed by a group of volunteers who meet monthly from February through October to plan the event. This year the group wanted to focus on “Pre-conception Health.” The Summits in 2007, as opposed to those in prior years are NOT aimed at parents or others interested in the topic. The target audience this year is health care professionals who provide information and service to women of childbearing age, with a focus on health care providers who serve populations where there is a disparate rate of premature delivery. Summits are supposed to provide a ‘call to action’ for attendees, and in this case the ‘call’ is to go back to their place of service and ramp up the education of a group of people who simply are not aware of the impact that their behavior can have on a pregnancy. The Boston Summit also includes a track that NICU nurses would find interesting. Most of the speakers are not doctors, but rather subject matter experts. Our goal is to provide up to 550 health care professionals with information that they can use to directly impact the rate of prematurity in Massachusetts. Our keynote speaker Karla Damus does address some of the ‘unknown’ causes or causes not attributable to behavior. I personally would not recommend attendance for anyone not in the target groups because they will be disappointed. If you are planning to attend to see what it is like, or how it is done, that’s great, but if you are going for content, it might not be worth it to you.
There is some excellent research being done with some surprising indications. For example, the last time I discussed this subject with Karla, she indicated that there may be some correlation between the age of the father and the frequency of prematurity! Another researcher at Beth Israel hospital feels that infections PRIOR to pregnancy may have a residual effect that also leads to a premature birth. The latest indications are that oral health is related to premature birth. In spite of all that we know, ½ of all premature births still have no known cause and Massachusetts has the highest increase in the rate of prematurity in the country with a 41% increase since 1994. For this reason we have chosen to go the health care provider route.
I hope we can do future summits and address research advances more fully. Let me know if I can provide additional information. Thanks again for your support.


My response:
Thank you so much for your response.
It was definitely helpful in clarifying the Summit. I think it is vital for health care professionals to have to information about healthy lifestyle in pregnancy, and I think it will be extremely helpful.

I just wanted to go a little more into why I brought up the points I did in my email to Patty. I am part of a large online support group with mothers from varying perspectives. Some mothers of preemies seem to be strongly against the MOD and publicly denounce the organization on the online forums and blogs I participate in. Many of these mothers are articulate and have the passion and networking ability to be really great foundraisers, yet they feel very dismissed by the MOD because they haven't seen what research is being done to help answer why those of us who did keep our bodies healthy during pregnancy still ended up having premature births.
I wanted to find a way to attract these mothers and let them know that the MOD is a worthy cause even when there is a lot of focus on the educational piece related to keeping yourself healthy during pregnancy and avoiding alcohol, drugs, smoking, etc. In short, I just don't want these parents to think the money raised is going to research that seems obvious to some...i.e. don't abuse drugs while pregnant, to put it bluntly.
When thinking about those people who are most likely to join forces with the MOD and to volunteer their time and money to the cause, I am inclined to think it's the mothers who did what they were suppose to during pregnancy but who were caught completely off guard by premature birth. Of course this is a broad generalization, however even Patty said that in her two years of working with families the volunteers have always been the ones who "did everything right" and most still do not know why their pregnancy was cut short. If we want to reach out to families who have the experiences to share I think we have to keep in mind that there are many still searching for answers, and because of this desire to know what happened, they support research that will hopefully one day reveal the mystery.
This is why I think getting the word out about new theories and research being done into unexplained premature birth is so vital. It will also be helpful to health care professionals, such as my own OB whom I'm sure doesn't feel satisfied telling me "we just don't know what happened...maybe it was because you were carrying twins." OBs want this information too, and even though they need to be reminded of how best to articulate and edcaute their patients on healthy lifestyle during pregnancy, they too might want information to help answer why their healthiest patients still ended up delivering too early.
I want to say I think the MOD has done a good job in the past several years getting away from the angle of portraying prematurity as something that happens when you smoke or do drugs during pregnancy. I just saw a great commercial where they address the very issue that the cause of many premature births is still unknown. This is why I support the MOD...I want them to fund research to find these answers.
In the past year I have seen prematurity from many angles. I delivered at 23.5 weeks for no known reason, my sister-in-law lost her daughter to prematurity after she was born at only 21 weeks, too young to be considered viable, and just this week my cousin's wife who underwent IVF for her pregnancy delivered her twin girls at 25.2 weeks. Three women who had prenatal care from the first possible moment, who never did drugs, smoked, consumed alcohol or caffine, all delivered too early. There are hundreds of more examples of women I have come to know via the internet who are in our same position; and to me, this is the key to massive volunteerism and foundraising involvement. When you experience prematurity directly or through a loved one's experience and you see a family who desperately wanted this pregnancy and did everything right and yet something terrible happened, you are going to want to support the cause that is invested in figuring out why this happened and what can be done to make sure it doesn't happen anymore.
You described very well the intent behind this Summit. Perhaps in the near future there will be summits geared toward families who have experienced premature birth and are interested in the latest data and research. Many of us want more children, and many of us are extremely afraid. There are innumerable parents I know who struggle with the decision of whether or not to have another child after an unexplained premature birth. I think we need to help these families. I think we need to show these families that the money they work hard to raise in the WalkAmerica events every year is helping to find answers.
Thank you again for your time in responding to what I had brought up to Patty. I hope we can discuss ideas in the future.


I just wanted to share with you because I want to know what you as parents of preemies would like to see the MOD do more of? Most moms who comment here are supporters of the MOD, but especially on the PE there are moms who just don't think the MOD is helpful at all, and I can see their point as I stated in my emails.
I think there is definitely a place for the educational piece for healthy lifestyles, but in all reality didn't we do that? I personally want more. I don't want women to leave their OB's office after their 6 week follow-up post classical emergency c-section with their baby in the NICU upstairs still on a breathing machine with this as an answer: "we don't know why you delivered early. But many people go on to deliver term babies after a preemie." Well you know what? That's just not a good enough answer for me.
I want to hear what you guys think. I want to do the walk this spring and raise money for the MOD, but I also want to DO more.