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Preemies
disappointed w/ March of Dimes
I was planning on doing a large fundraiser this spring for March of Dimes but after seeing them on the Today show a week ago for Preemie Awareness Month I am having second thoughts. They only talked about preventing prematurity by being healthy, not doing drugs, and not smoking. I think its terrible how no one mentions that prematurity can happen in perfectly careful, healthy moms. If I had been more aware about preterm labor I may have read more into my signs. Not to mention my midwifes office also blew off my symptoms. It is terribly sad and misfortune that no one in the medical community wants to make every pregnant woman aware that preterm labor is a possibility. Anyone else feel this way and also wondering if anyone knows of any other good charities that support preemies. Thanks.
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Re: disappointed w/ March of Dimes
I totally agree. If it were me, I'd be contacting the March of Dimes to let them know why you now won't be doing a fundraiser.
That is really insensitive of them.
Like you, I had Pre-e and had doen EVERYTHING to be really healthy during my pregnancy and yet I still had issues resulting in a preemie.
Not cool MOD, not cool.
I would do a little more reading before you totally write them off. The MOD is the reason we have steroid shots and almost all the drugs and procedures used in the NICU were developed by them. Yes most of us on the bump did everything "right", but you also need to realize that we aren't the majority of the preemie population either. There is a lot to be said about educating people about proper prenatal care. The spot on the Today show was them trying to reach the masses in the most general way, it doesn't mean that is all they care about.
The March for Babies is one of the BEST ways to help support prematurity awareness because you get to tell YOUR story and help make people aware of all the different things that can happen. I urge you to take another look at the MOD because without them our babies would have had a very different outlook.
Need help with high fat food ideas? Chunky Monkey
This. I'd assume that with a limited amout of time to get a message out, they have to pick and choose what they focus on. Their website is VERY broad and touches on a LOT of different things that can result in premature birth.
I heard an ad on the radio the other day. They said pre-maturity can be prevented by exercising and eating healthy. I screamed fvck you so loudly that I kind of scared MH. I shouldn't be surprised though, the ad was for a hospital that told a grieving mother whose child was still born (by gross negligence of her hospital) that "baby's don't die"
Sorry to go off on my tangent. I would contact them and tell them why you won't be doing a large fundraiser.
I too was some what disapointed w/ MOD. Prior to being pregnant with LO through my BFF job they are big fundraisers/sponsors for the MOD walk here in Southern CA. I have always participated with my friend in the walk and learned a lot in regards to the MOD.
When I got pg I also was doing every thing by the book, being very careful and taking good care of myself. At 21 wks I went in to the High Risk Unit due to IC. I had an emergency cerclage at 21 wks because I was 3 cm open and had a bulging bag. Well I suffered from pre-term labor was on hospital BR and had LO at 33 wks. When LO was in the NICU I was surprised that all the hipe of MOD and I didn't hear or was in any form told of the charity or acknowledge by them. I would have assumed that they being such a huge charity for preemies and have association with I sure most if not all hospitals, they would give you as a parent of the premature child some type of acknowledgement and offer their services to you. I don't know if they do that, but in my case they didn't and I was really disappointed. Especially since I have been a participant in their annual walks for the last 5 years and have help my friend in fundraising for them.
Their services are more educational and research based then parental support based, IMO.
And the research says, doing drugs, treating your body poorly can result in premature babies. I don't think there was anything wrong with the Today show segment. If they had a limited amount of time then it makes sense that they would say these are the things you can do to prevent having a preemie, rather than harping on the things we (pre-e, ic mamas, etc) cannot prevent.
Do I wish the general population knew all the facts about preemies, yes.
But I know from my hospital experience that there are many more moms who could have prevented having such early babies who really need to recieve that message.
Also, the MOD is responsible for SO many good things, such as the production of surfectant, which saved my son's life. So before you write them off I would do a little more research and see what they have really done for you, and for all preemies.
I think they were just trying to let people know what they could do to be proactive, because honestly there are so many things that can contribute to prematurity that you have no control over. It is important to inform the public of what they can do to prevent it, regardless of how silly or obvious it seems to us. It is impossible for them to go into every single cause of prematuity during a short TV segment. My daughter is here because of them and they are really such an important organization. I would hate for you to disregard them becuase you were offended by a TV segment.
I don't really think that is a fair criticism of such a large organization. Their main focus is on healthy full term babies, and the most direct message they can have to the masses is to make that happen by having a healthy pregnancy. I don't know the percentages, but I bet A LOT of prematurity is because people do not take their vitamins, and do smoke or drink. They can't be out there talking about pre-eclampsia, hellp, pprom, preterm labor, because all of those things are things that women think "wont happen to them" they have to address things that women think they can control. And then work on the other things.
Who would want to support an organization that went out there saying "be healthy, but even then, ALL this can get you"?
Honestly I would probably blame your hospital for that. The MOD's mission is to help prevent prematurity and help those babies who are born early. They aren't an organization that reaches out to new parents to help support them, they do their best to help save their baby's life through research and education. That is why we fundraise for them; so that our babies have a chance. Not so they can hold our hands when our babies are born (not that we don't need that, but their our other organizations for that).
It makes me really sad that people have decided they aren't a worthwhile organization. They made it possible for preemies to have a chance at life.
For the PP who thought her midwives didn't do enough, your beef should be with them, not the MOD.
Need help with high fat food ideas? Chunky Monkey
I agree with these sentiments. I feel your frustration that they discuss what people can do to minimize their risk factors and don't focus on how it can happen in otherwise healthy pgs too. But as this PP says, that message is basically a scary one. "Guess what? Even if you do everything right, your baby might come early and have an extended hospital stay." There's not really anything informational about that other than, I suppose, prepare for the worst no matter who you are. While I do sort of wish I had known more about what to do expect if I experience PTL or have a preemie, I also wouldn't want all pg women out there stressing out about having a preemie when they don't have any risk factors.
I had a 100% healthy, uneventful pg until the day I went into labor with DS. I had zero risk factors. I got to spend 34.5w pg and worrying only about the normal stuff associated with becoming a first time mom. If I knew what I was in for, I might have been just a big bundle of nerves and not been able to enjoy much of any of it. I go back and forth as to whether knowing a lot ahead of time is better or worse for ppl who have normal healthy pgs before prematurity strikes.
It's sad that so many premature births are probably partly due to poor prenatal care, but, like you said, so many of us also did all the right things.
Consider contacting them!
i get where you're coming from. i think all of us deal with some resentment over the fact that we "did everything right" and still got an unexpected and harrowing experience for our troubles.
i have a condition called APS. it was not diagnosed after my first miscarriage (which they told me was "normal") or my second (which they also said could be totally "normal") but after i developed a life threatening (like "where's your living will? we're going to try and stop the seizures") case of ecclampsia/hellp and lost my son at 21weeks. on bloodthinners, the only treatment for APS during pregnancy to stave off the pre-e/hellp i was able to keep my daughter baking until 27 weeks.
there is no section in any pregnancy book at barnes and noble that talks about APS. there are few doctors who have actually treated it- so they don't even typically consider testing for it- or consider it at all. even WITH knowledge (thank you "what to expect...") on pre-e i was caught completely unaware. my doctors were also caught unaware. my bp was normal, i saw no spots, i was mildly swollen- but nothing abnormal for pregnancy and few too much soy sauce. i presented with lower abdominal pain (not right upper quad like is typical in hellp). they did some blood work and it came back normal. i got some meds to calm my stomach "gas" and they sent me home. 2 days later i was writhing on the floor in pain. i mean EXCRUCIATING pain. it still wasn't upper right quad... still no spots... still not much swelling... and i went in. they did all the bloodwork and told me i had gas. they took a pee sample and the doctor came in to get it as they were already going over my discharge info- he got this shocked look on his face. i guess it's not supposed to look like strong tea mixed with red gatorade. they wheeled me back and by the time they did another round of bloodwork my organs were failing and i was having seizures. none of they normal signs or symptoms ever occurred.
similar situation with my daughter- though after the previous experience they put me in the hospital at about 26 weeks for a headache. my mfm said "she couldn't trust my body to tell her what was going on". sure enough... i developed spots this time, swelling, upper right quad pain- but for a week my bloodwork was normal. overnight one night my platelets dropped to 27k and i got a transfusion and delivered my daughter by noon that day.
i think my point- after all that.. if i can find one
- is that it has to be about empowering women to get help, to advocate for care, to demand treatment, to become educated about issues and know their bodies. (of course with first time pregnancy that's sort of a joke. i think i could have told them my eyes changed color and they would have laughed and said "oh sweetie, that's totally normal.") it's impractical to expect every cause of prematurity to be covered in every doctors office or on a tv show or in a pamphlet- that is a seriously LONG list.
since i have this broken womb we recently adopted. in dealing with our birthmother i was absolutely SHOCKED that there is a world in which people don't get prenatal care- they don't even consider it. they don't stop smoking. they don't even take prenatal vitamins or consider changing their diets. i think, honestly, if she had been the drinking/drugs type she probably wouldn't have stopped that either. she delivered her other two kids at 4 and 5 weeks early- totally preventable prematurity. i can't remember exactly how far along she was when the "i am ready to have this baby" started- but suffice to say it wasn't much past 30 weeks. she had water leakage scare and said "i'm sure everything will be fine"... i had to send her info from the MOD website and first hand accounts of my friends that ANY prematurity can have long lasting effects. and no, a 32 weeker probably isn't going to be a take-home-baby. being pregnant was just a condition that lasted a short time while you did the normal things you would be doing... going to bars, smoking, manual labor, eating solely ramen and cheesy puffs. and this girl has a GREAT heart- really. this isn't some jerk you would assume just doesn't care about her kids... it's about a whole culture of people who have missed out on education and are socialized that this is a normal way of behaving and treating your body and baby during pregnancy... THOSE are totally preventable cases of prematurity. and i can tell you our birthmother and her friends DO watch daytime tv and talk shows. the more these women can be resocialized to care for themselves and their babies in utero (and out) the healthier the country's babies will be. they need to hear and see that not going to the doctor and smoking "only" a half a pack a day isn't going to cut it. (our birthmother actually said "the nicotine withdrawl only lasts a few days"... this girl is a TOTAL sweetheart... but this is the world she grew up in- this is NORMAL for her and the women in her family and her friends... totally expected and acceptable.)
at the end of the day my daughter wouldn't be alive without work done by MOD. if there were no other reason to support them, that would be enough for me.
whew. that got a little wordy. ok, a LOT wordy. sorry!
I never said the organization wasn't a "worthwhile organization" and I don't think any body else in this thread has said that either. Yes I do know that they are primary avocates for teaching prevention of prematurity through research and education. And yes I am grateful that due to the organization my son just like all of you who have had a preemies stood a chance to survive, because of MOD medical technology for premature babies has gone so far. Yes I am grateful and I will continue to support the organization every year as I've done for the past 5 years.
But I get what the OP'er is trying to say. Yes I understand that we who have done everything the right and healthy way are not the majority of premature births, and MOD focus is more on those who are at greater risk. But they should also focus a little more that premature births can also happen in a normal and healthy pregnancy, and that is what I understand the OP is trying to say here.
And No, I have not thing to blame my hospital for. Not sure what you are referring to with that. I have not thing but to 1st praise God, my OB and then the Nurses and Doctors of my hospital. They were excellent and help us through a very difficult time. They are a rated Level III hospital and are reconized as one of the best NICU units in the West Coast.
To recap yes I was "somewhat" disappointed in MOD. No I didn't need them to come out to hold my hand, I was already holding the hand of my mighty God.
How exactly do you propose they "focus a little more" on premature birth happening in a normal pg? Do you mean mention it in every TV opportunity? I think it'd be nice for them to say "there are a lot of factors that can contribute to prematurity; a lot of them we don't understand and can come from otherwise healthy, normal pgs," but I think they DO say that on their website and in many of their materials. If they didn't in one TV appearance, I wouldn't pull my support from them or not fundraise for them anymore.
And to answer your ?, ijack was referring to this quote of yours:
"When LO was in the NICU I was surprised that all the hipe of MOD and I didn't hear or was in any form told of the charity or acknowledge by them. I would have assumed that they being such a huge charity for preemies and have association with I sure most if not all hospitals, they would give you as a parent of the premature child some type of acknowledgement and offer their services to you. I don't know if they do that, but in my case they didn't and I was really disappointed. "
You wanted acknowledgment or their services offered, they didn't, and you were really disappointed.
I agree it was a small segment and they couldn't possibly cover all the reasons why babies are born too soon.
I volunteer a lot for our MOD here. I have to say overall they are very underfunded. Donations are WAY down. They have had to cut staff leftt and right. I asked them for posters to put in the hospitals here to let families know about what they do and they don't have the money to pay for them. It's really sad. A lot of the time the MOD wants to help hospitals and because of red tape and adminestration they are denied access to the hospital. It's so crazy. But if you want to see change be the change! Call your local chapter and volunteer. Don't just complain. They really need our help and support.
Rowen Alexander born 10 weeks early 1/28/07
www.4wquestions.blogspot.com
Yes that is exactly what I am saying, they should address that prematurity can also happen in a normal and healthy pregnancy in their TV appearances, just like they cover everything else that causes prematurity. Preterm labor, IC, Pre-E, GD...etc are all factors of premature birth as well. There organization is soley about preemies so they should address all factors that cause premature birth in their TV and Radio ads too, not just on the website and/or reading material. That's my opinion.
Now I don't think you read my post clearly. I never said I will stop supporting the organization. I will contiune to be part of MOD annual walk, and will still be involved as I have been in the past. I think its a great organization.
Yes I was disappointed and that feeling hasn't changed. She said I should blame my hosptial for not having MOD acknowledge us, and I don't see why I should. I am over the disappointment, I don't hold a grudge. I was stating my opinion and agreeing the OP that they don't address premature births in healthy pregnancies as much.
I don't think anyone attacked anyone personally. Some posters just didn't agree that MOD not mentioning other reasons for preemies in one TV appearance would be upsetting enough to make them not fundraise for them. You are of course entitled to your opinion.
The PP'er who was "really disappointed" that MOD didn't reach out to them during her NICU stay prompted a response about why MOD doesn't do that in a lot of hospitals. We all agree that moms with preemies need support; some of us just think that MOD is not necessarily the problem in that case and expecting them to address all situations in a single TV appearance may be too tall an order and, in our opinion, it would be sad to see ppl stop supporting MOD's efforts as a result. There was no name calling or personal attacks.
To answer your question, I am not aware of any non-profit that supports medical research or parental education on prematurity other than MOD. If you find one, please do share with us. A lot of us are trying to introduce new initiatives in our areas to give more support to preemie moms, and many of them have been channeled through MOD because there's no other visible organization doing that work.
I wasn't trying to suggest you were going to stop supporting MOD. My reference to pulling fundraising was to OP's initial mention of her second thoughts on doing a fundraiser she had already planned to do.
Yes I was disappointed and that feeling hasn't changed. She said I should blame my hosptial for not having MOD acknowledge us, and I don't see why I should. I am over the disappointment, I don't hold a grudge. I was stating my opinion and agreeing the OP that they don't address premature births in healthy pregnancies as much.
Unfortunately the MOD can't reach out to families unless the hospital allows it. I started a support group at the hospital I delivered at and I've seen first hand how hard it is to get through hospital red-tape. I tried to get the MOD involved, but many hospitals don't allow it. My point was merely that it's not necessarily the MOD's fault for not reaching out to you, it could very well be that your hospital doesn't have the proper programs in place and I would urge you to contact them and help get something started. It's unfair to blame an organization for something they didn't do, if it's not in their practice.
I wasn't trying to upset anyone, I was just surprised that everyone jumped on them because of one small tv spot when what they do is so much more. I would hate to think that any rash decisions are being made and was trying to educate everyone since it's a cause dear to me and one I know quite a bit about.
Need help with high fat food ideas? Chunky Monkey
I'm sorry if you felt that you were being attacked. Every single person who responded has been though the horrible preemie rollercoaster and we all understand the pain and frustration associated with it.
To answer your original question, I am unfamiliar as to why you had a preemie, but I know that I also donate to the Preeclampsia Foundation since both my babies were premature due to pre-e.
https://www.preeclampsia.org/