Monday, January 26, 2009

Survey Says

A while ago, way back in the early days after I lost Caleb, I came across an article that referenced a survey being done in order to examine the experience of parents(mostly mothers) who had lost a child to stillbirth or neonatal death. The purpose of the survey was to give the medical community, i.e. doctors, nurses, technicians etc., insight into the impact of the loss, not only as a life changing experience, duh, but also what the importance of the actual giving of the diagnosis was/is. Simply put, the author of the study was looking to see how crucial the initial delivery, pardon the pun, of the news was to the grief process. Not just the diagnosis but how it was handled be the news giver, what information should be given, how the information should be dealt with by the provider and other issues related to the first part of the experience for the parents.
Additionally, she, the author, inquires as to the lack of information made available to pregnant parents as to the risk of stillbirth in pregnancy and how that affects the parents who later are on the receiving end of that diagnosis.
I participated in the study, taking the 25 minutes or so to answer her questions with the hope that my voice, my experience with an inept medical group, might one day help another mother escape the same shitty handling I had.
The other night I got an email from the author, asking for some follow up information and asking if I wanted to see the preliminary report. To be honest, I had completely forgotten I had even done it(thank you but her email recalled the memory for me. I answered her follow up questions and I asked to see the study. Her results are akin to what we all would have told her. That having a compassionate caregiver, who is willing to discuss, for as long as we need, the death of our baby, makes an enormous difference in how we grieve. Her results are a four page study with sexy graphs and other fancy data but the bottom line is that the medical community needs to reevaluate how they treat mothers, parents, of stillborns and neonatal loss babies.
She is still compiling data for the study as it is still a work in progress so she continues to collect data. Which is where YOU come in.
I offered to post the link to the survey on my blog for her so that she could gather more input from dead baby moms. I know so many of us were treated poorly by the medical people whose duty it was to care for us. Here is an opportunity for all of us to let them know what needs to change and how they need to do better when treating the families who are experiencing the tragedy of the loss of their child.
If you want to participate in the study you can find it HERE. And let others know on your blog too. Link back to me or post the link on your site.
The more of us who speak, the louder our voices become. Maybe they will hear us and actually listen.
A girl can dream, right?


Tash said...

wow, awesome, thanks for doing this. I hope the medical community takes a few moment to actually READ the damn thing and then IMPLEMENT some changes. I had great treatment, but I'm happy to report that in hopes it will show someone what "right" looks like.

Ya Chun said...

I too just got the follow-up, but missed the link to see the data! Drat!

Emily said...

Last night I completed the survey. Thanks for posting a link. We were treated well, so I hope my responses act as an example for other medical teams. We lost our daughter at the very end of this past November, so everything is still very fresh.

luna said...

thanks for posting this. the author suzanne pullen wrote a series for the SF Chronicle about the stillbirth of her child. I remember how profound it was reading at the time, soon after my own. thanks again for promoting this.

CLC said...

I believe I already filled that out as well, but I didn't get a follow up. I will definitely post the link on my website though. Thanks!!