Really struggling with the latest newsletter from this site.

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Really struggling with the latest newsletter from this site.

Postby Norinda » Wed Dec 19, 2012 12:13 am

In case you missed it, the latest email from this site contains a story about a mother who develops pre-e, delivers her daughter prematurely, but whose health steadily declines until she sadly passes away several weeks later. It's a very sad story, and it's extremely close to my heart, having lost my own sister to pre-e and HELLP syndrome about seven months ago, just hours after she started feeling ill and an emergency c-section at 33 weeks saved the life of her daughter.

Where I took issue is a photo of the woman's baby daughter. A chubby, cute, thriving little baby and underneath her, a caption that says, "When I wish... I wish for my mommy's arms to hold me." And right next to it, a big old red button that says DONATE. I'm not sure how to put into words how that made me feel. I mean, hey, babies can't talk, and it seems incredibly emotionally manipulative to put words in that little girl's mouth for the sake of donation shilling.

Maybe I am mistaken, but I feel like I am probably the dream demographic for such a fundraiser. I mean, who could possibly understand the pain of that family and the need for education better than my own, having lived through it ourselves? I always find the newsletters kind of bittersweet and tough to read, but I read them anyway because I CARE. I UNDERSTAND the need for education on this topic. But I really feel like someone stepped a toe over the line with this baby caption. It felt like you were capitalizing on the trauma of families like mine, and I felt betrayed, since I felt like this was a place I could go to for grief support if I ever wanted it. I'm sure anyone reading here in the grief board knows that the holidays are a special kind of misery when you lose someone who was very dear to you. Even expecting this, I have been shocked a lot of the time at just how flattened I feel most days this December, and well, I didn't need this, and probably neither did anyone else on your list who suffered a similar loss.

I hope that this org really takes the time to hear what I'm saying, and appreciate how their attempt at finding a donor actually served to alienate someone who needed them most, and adjusts their fundraising strategies appropriately. If nothing else, know that I am never very likely to send money when someone makes me feel depressed and full of grief about things - I prefer to donate in hope.
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Re: Really struggling with the latest newsletter from this s

Postby holly3372@msn.com » Wed Dec 19, 2012 04:09 pm

Oh I am so so sorry you felt this way. I myself almost lost my life but did not. I did watch my tiny son struggle for 4 long months in the Nicu and then die. Not a day goes by I don't think of him and miss him. How I wished for a cure then and now. I felt if my son could speak he too would wish for a cure and people would learn more about this disease. December is very hard for me too, I understand the very bittersweet that now comes with all the holidays. After reading that email however I donated sent it out to family and friends who also donated. Again I am so sorry for how it made you feel . I know we are all very different when it comes to grief and what may be so hurtful to you may be helpful to me and vice versa. Again I am sorry for your pain your feelings are valid . Sending peace and love to you.
Benjamin Spider Reeves born 4-28-2010( 1lb 6oz 26 weeks to severe pre-e and Iugr) we lost you after 4 long months in the NICU. You fought so hard,and were so brave.Our first baby .We miss you everyday and love you forever xo

Expecting ,dreaming, and hoping for our baby Girl sometime in January 2013
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Re: Really struggling with the latest newsletter from this s

Postby kerisue » Sun Dec 23, 2012 09:22 pm

I think the point was probably to underline how tragic this disease can be- depriving that baby of her mother (and you of your sister, and me of my daughter.) Forever. I had nothing to do with formulating that story or that request for donations, but I see it less as "shilling" than as a desperate hope that with donations we can fund research and education. My thought is- go ahead and capitalize on my trauma, my loss, and my daughter's loss, if that means that more money comes in- money that can be used to work toward primary prevention of preeclampsia and a cure so not one more baby or mama has to lose her life and not one more person has to feel the grief we feel. You feel differently for valid reasons; but luckily there are hopeful, even fun, ways to donate and raise money too, for example the Promise Walks.
Mama to Millie
born June 2010 @ 24 wks. gestation due to my severe PE and CHF
lived 25 days, loved and missed
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Re: Really struggling with the latest newsletter from this s

Postby laney_p » Wed Jan 02, 2013 12:35 am

Dear Norinda,

Thank you for sharing with us your thoughts and feelings about the recent When I Wish letter. We are so sorry for your loss and the additional grief that the letter caused you!

It's true that the letter was meant to be a bit provocative, to remind our readers that even though modern medicine has made a great deal of progress, hundreds of women still die right here in the US because of preeclampsia. And as our team crafted the letter for our appeal, we spent a good amount of time to discuss how many of those supporters, like you and your family, know this fact too well from personal experience with women like your sister. We decided to tell this story because we felt the message was too important not to convey, for the women who could not be with us to share their story and voice.

We had the full support of the family of Rebecca and Cheyanne to use their story for this appeal, and as Kerisue mentioned her comment, their feeling was that fundraising specifically to end maternal mortality would make it so that no other family would have to feel what they had personally been through. The letter was meant to emphasize that programs like the CMQCC in California and other maternal mortality review projects have the potential to prevent preeclampsia from threatening and taking the lives of mothers. We are so sorry that our appeal made you feel so full of sadness and despair, and made this difficult time of year even harder for you. We often hear from well-meaning friends that they didn’t want to bring up our loss as it would “remind us.” In reality, our loved ones are always in our minds, so we felt it important to help our supporters know that we are actively doing something about these painful losses.

We want you to know that your response is just as valid and important to us as those who appreciated the appeal and we are very glad you took the time to reflect here, rather than simply walking away. I hope you will find that this IS an organization where you can come and share your grief and your sister's story, and find a way, like so many of our supporters have, to turn that grief into a powerful catalyst to help others. If you have any additional thoughts you'd like to share, feel free to reach out to me by email or private message, or add your comments to this thread.

All our sympathy and peace to you and your family,
Laney
Director of Community Relations for the Preeclampsia Foundation
*does not provide any medical advice*
for more information, please visit www.preeclampsia.org

La Director de Relaciones con la Comunidad
*no ofrece consejo médico*
Se habla español
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