Earlier this month, I got the chance to attend the International Stillbirth Alliance conference in Vancouver, Canada. It was incredible! As someone who goes to scientific conferences occasionally for work, I cannot tell you often enough how incredible it was. First of all, it is very, very rare to have a scientific conference that is open to patients. Whether it is cardiology, or nursing or my own profession of information science, we talk a lot about the people we are serving, but rarely do we invite them in the room. This conference was different. About one third of the people there were bereaved parents. For one woman, her loss was over 30 years ago, but she wanted to be there to hear what research had changed in the time since her loss. For another couple, they lost their sweet baby just 7 weeks earlier, and it was obvious that the grief was still so raw and painful. I don’t think they stopped touching each other the whole time, because they knew that if they did, the other one would fall. But in truth, it was a bit of a lie when I tell you that one third of the attendees were bereaved parents, because it was actually higher. Almost every researcher began with “I’m Dr. X and I began researching stillbirth after my own child was stillborn.” The remaining third? Midwives, doctors, nurses, social workers. People who care for us every day, who need more insight into how to best care for parents of stillborn babies.
So what did I learn? Too much to tell you about in one posting, and I’ll be adding more as the research is published and I can delve into it further.
But one impression that stuck with me is the problem of blame.
As mothers, we often blame ourselves. Somehow we feel that the loss of our children is our fault. Doctors too often blame themselves, which is why you might feel they are avoiding you after your loss. They are! Even if there was absolutely nothing they could have done differently to change to outcome, they carry some guilt about the outcome. Sometimes of course, our defense mechanism is to blame one another. Doctors take the feeling of guilt away by looking at “maternal causes”, and we mothers take the feeling of guilt away by blaming our doctors for poor decision making. It came to a head in one poignant question for me, when a researcher was talking about how he found that obesity raised the risk of stillbirth. Even just being overweight raised the risk. He was wondering about how doctors could be better at having the conversation with women about their weight before they even become pregnant, and whether we should look at inducing women who have a BMI greater than 30 at 40 weeks, instead of waiting until 42 weeks. And one brave, powerful woman stood up, cleared her throat and told him exactly how hard it was to be an overweight woman who saw that this was a contributing factor to her son’s death on the autopsy report. Having patients in the room, working right alongside researchers, changes the way our stories are told, and changes the perspectives of the researchers.
It is so incredibly powerful.
Blame, both of ourselves and of others, is something we need to get past, if we hope to prevent future stillbirths. We need to embrace difficult conversations, so that every preventable death can be prevented. That can be hard, when the grief is raw, when the wounds are fresh. I’m so glad that ISA is committed to doing that, and to bringing us into the conversation.
Do you have ideas for how we can further the conversation, to work with researchers and doctors on preventing stillbirth? If your autopsy report listed “maternal factors” how does that make you feel? Should doctors be doing more to help women quit smoking, or lose weight, before they become pregnant? After they’re pregnant? Let us know your thoughts!
This post first appeared on Still Standing Magazine.