A few days ago, I received an email from my cousin's wife's sister (follow that?) that originated from a woman whose daughter had been born sleeping. She was passing along information regarding stillbirth and some of that information, I had been planning to post here but hadn't fully gathered my thoughts, the research and the links.
After Abbey died, I discovered that there was a big push within the community for acknowledgement that these babies, our babies, really did exist. Many states issued a death certificate without a corresponding birth certificate. How can a person die if she never existed? Massachusetts was a state that offered a Certificate of Birth Resulting in Stillbirth. A lot has changed over these past 7 years and now we want more for our babies and for the future. Why did my baby die and what can be done to prevent this from happening to another family?
Currently:
- There are no national standards for reporting, tracking or researching stillbirths.
- Reporting stillbirths is not required in many places.
- There are no national standards for informing parents of their options. Because there are no national standards that would assist parent(s) in making an informed choice, it is easy for doctors to influence decisions at a time when parents aren't thinking clearly.
- FMLA does not apply to parents of a baby who has been stillborn.
- There is no significant research being conducted as to why at least 25,000 to 30,000 babies are born still each year in the United States.
There are people working to change this.
The Sudden Death Data Enhancement & Awareness Act. We need you to tell your representative that this issue matters to you. It's very easy and will only take a few minutes of your time. Click on this link - it will take you to a page with more information. Click on the first link, then the button for individual and then complete the form.
Farley-Kluger Initiative to Amend the FMLA. FMLA does not extend benefits to employees that have experienced the death of a child, regardless of the age of the child. Currently, most employers offer a few days of bereavement leave. Another quick and easy petition can be found HERE.
Autumn Joy Stillbirth Research and Dignity Act. This was recently passed in New Jersey and is most definitely a step in the right direction. It would be great if we could have national standards and not those specific to certain states.
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The doctor on call when I arrived at the hospital responded to my question of what could have caused my baby to die with, "Did you take any drugs?" It made me feel that my daughter's death was my fault and I can't tell you how much I wanted to rub that piece of paper with the results of my blood work into her smug face. The doctor, who delivered Abbey and then went on to deliver my triplets, was very kind while being very matter of fact. He offered and suggested that an autopsy be performed even though the results may offer nothing. He also ordered additional blood testing to see if they could find something within me (and not "drugs") that could have caused her death. This should be standard. All options should be known.
Ultimately, Abigail's death was classified under "unknown causes."
Please note that some of this blog post was plagiarized but it was done so with good intent.
6 comments:
Thank you for this post. This issue is close to my heart as I have three friends who have had full-term stillbirths. The love and hope that goes into growing a much-loved and wanted child should be honored with a thoughtful, thorough response by medical professionals and the legal system, and the individuals performing those jobs should be trained and given the resources that they need to deal with what is likely the worst day of these people's lives.
I've followed your links and hope that others will do the same. On a related note, I encourage support of the organization Now I Lay Me Down to Sleep, a nonprofit that offers photography services to capture the only moments a family has with the baby/babies they can't take home. I would never try to speak on behalf of bereaved parents, but I know that this organization's services have been a tremendous comfort to my friends. They have each told me that it means so much for their loved ones to get to see photos of their child and be able to share a little bit in the experience.
Anyway, I just wanted to let you know that I appreciate your post and welcome any other resources you want to share that could make things a tiny bit easier for these families. Thank you, and my sincere sympathies for the loss of your daughter Abigail.
Well, Sarah. You know of course that this post got my attention right away. I know in my heart that even when you decide your life is too hetic to carry on this blog, you will always be in my heart as a "sister" who suffered the same loss as I did.
What amazes me is that some thing have NOT changed in the 24 years between my son's birth and your Abbey's. Doctors still don't know what to say, and instead of perhaps admitting that, they say something stupid. But, there are some things that have changed, and I guess for the most part that is a good thing. When we asked to be able to hold our son, we got a blank stare. And when I demanded it, we were only give perhaps 10 minutes in the delivery room. We were told his body could not leave that room with us. When I guestioned taking a photo, I was told no. We could not do that. Something I have regretted for 31 years. After all he looked fine, and I have photos of my girls. Not having a photo of him, even if it were just for me, is something I don't think I will ever get over. We had to wait over a year to get anything from the hospital with his name on it at all. Well, except a bill. They sent us a bill for a nursery stay that he was never in. Lovely.
Lisa - thank you for your kind comment. And thank you for mentioning Now I Lay Me Down to Sleep. Those photographers are so amazing for doing what they do. They deserve many mentions and attention.
Debbie - we are most definitely sisters. It is very sad how some things haven't changed. But a lot has. We can only hope in our lifetime, more changes. I have regrets too so you're not alone there. Thank you for sharing your son here with us.
We participated in a research study in my pregnancies with Cole and Claudia. There IS research being done, it is significant...it just tends to be ignored by the medical community at this point. Too much room for lawsuits from doctors ignoring the obvious cord issues that can be seen on ultrasounds. In my case, cord issues were present with all 3 of my babies. Because of the research project and nightly monitoring, it didn't kill 2 of my babies...just the first. There are wonderful DVDs and research out there on how cord issues can be caught AND prevented. Not flukes. Not "lightening won't strike twice". The research shows cord issues and repeat cord deaths CAN happen again but can be caught and monitored. Cole and Claudia are living proof of research: http://preginst.com/
I also want to chime in to say that thanks to your posts about Abbey, I knew how to respond to a grieving mom. She is pregnant again, and because of you, I know to acknowledge her fears about this new pregnancy and talk about Gabriel (the baby she lost.) She was so thankful, I really wanted to tell her that it was all because of you, but that might have sounded a bit odd :) So THANK YOU!
Chantel - thank you for sharing.
Anon - thank you for your comment. I truly appreciate it.
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