Stillbirth resources

Stillbirth is a word that is whispered, or more often, not used. Most people have no idea how frequent stillbirth is because nobody talks about it. In the U.S., one in 160 pregnancies ends in stillbirth, which is 26,000 lost babies every year. The American Congress of Obstetricians and Gynecologists held their annual meeting last month, and for the first time ever, they had a panel on stillbirth. We might be racing along like snails to solve this, but at least we have started moving.

I have been compiling a resource list for parents and others who have been affected by stillbirth and want to contribute to stillbirth prevention and education. There isn’t any large, national organization dedicated to reducing stillbirths, and I can’t list every group. There is plenty to do.

Most states have no uniform way to collect stillbirth data. Most do not have policies for providing mental health care to couples who have experienced a stillbirth. Most do not issue birth certificates. If you want to get involved, here are places to start:

Healthy Birth Day
This nonprofit was founded by a group of Iowa mothers who lost children to stillbirth. They helped get the Iowa Stillbirth Surveillance project passed as a law. The law creates uniform gathering of data on stillbirths. They also started the Count the Kicks campaign to educate pregnant women about the importance of kick counts in reducing stillbirth.

Stop Stillbirth ASAP
Stop Stillbirth ASAP seeks to create a coalition of groups dedicated to reducing stillbirth. The organization’s co-founder, Debbie Haine Vijayvergiya, worked to pass the “Autumn Joy Stillbirth Research and Dignity Act” in New Jersey. The law, which was named for Debbie’s daughter, created a statewide policy for the treatment of families after a stillbirth and for stillbirth data collection. I talked with Debbie recently, and she is hoping to find parents in other states who would like to work on similar legislation.

The Human Placenta Project
Are you excited about placenta research? I am! The National Institute of Child Health and Human Development has begun a huge research project to better understand the placenta, which is thought to be responsible for many unexplained stillbirths along with a bunch of other pregnancy complications. I spoke with researcher Susan Fisher, and she said that they can now accept donations of archived placentas. If your baby was stillborn and you had testing done on the placenta, she can use saved placenta cells for future research. To donate, contact her at sfisher(at)cal(dot)ucsf(dot)edu.

I had hoped to include information about how stillbirth parents can get involved in educating doctors and medical providers to better help grieving families. As far as I can tell, this education is piecemeal, done differently by each medical school and hospital, if it is done at all. If you have done educational speaking, please fill me in on your experience.

2 thoughts on “Stillbirth resources

  1. Thank you so much for this list and yet how frustrating it is that it is so short. When my son died, I wanted To find something like these organizations, some way to contribute to preventing stillbirth, but kept only finding palliative care (as important as that is). Later, when we found out the causes, I was surprised to figure out that I have a basically undiscovered clotting condition: there is no test and doctors have only recently started prescribing blood thinners for pregnancies like mine, without any real studies. We think it’s all known, all been named. And yet most people never even learn the cause of their child’s death.

  2. Please include the Star Legacy Foundation in your list. We are a national organization dedicated to stillbirth awareness, research, education & prevention. We are a co-founding organization of the ASAP Coalition and among other things, hold a research stillbirth summit every two years.

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