We need a spokesperson

I generally fear Angelina Jolie, but I deeply admire her for speaking out last week about her double mastectomy. Many, many women will feel less alone in making that choice because of her. I have to say that, in some ways, I feel a little jealous of those women.

Stillbirth doesn’t have a spokesperson. I wouldn’t wish it on anyone, of course. I have moments though of wondering why this never seems to happen to celebrities. We only pay attention to medical problems in this country when someone famous — and preferably attractive and likable — experiences that particular problem. John and Jackie Kennedy’s first daughter, Arabella, was stillborn, but that happened at a time when people weren’t even allowed to use the word “pregnant” on television. Women didn’t speak publicly about that sort of thing.

And now we’ve reached a point where most people think that stillbirth no longer exists. I was interviewing a doctor recently who does research related to stillbirth, and she told me how grateful she was for my work. She said that the lack of news coverage makes it difficult to get funding for stillbirth research.

I felt proud for a moment and then thought: Am I it? I’m the one responsible for getting the funding? I have read several wonderful books and articles on stillbirth, so I know that I’m not alone. But the activists are few.

I understand the reasons. I know that most parents go on to have another baby as quickly as they can, and they want to devote their energy to that new baby. I would have done the same if I could have.

It’s also a wearying topic to continue discussing. When my grief was at its most raw and I constantly wanted — needed, really — to talk about my experience, I was also at my most incoherent. I was too emotional to be educating people. As I’ve healed, I’ve become better able to articulate my experience, but I’m also less passionate about things than I was.

Yet, I don’t know that I want to pass this work to someone else. I worry that no one will pick it up and really run with it. I don’t want Eleanor to have a 1 in 160 chance of going through this. That number is far too high. How have we decided that’s acceptable?

We need a big team — people all over the country — pushing for research funding. Right now, I don’t think we even have enough people to get out on the field. Certainly we don’t have anyone famous. For now, I’m on the team and hoping that the scrappy underdogs can get something done.

4 thoughts on “We need a spokesperson

  1. Thanks for writing this and for the work you do. I have wanted to find a nonprofit that focuses on stillbirth research, not just consolation. Do you know of any? There is March of Dimes, but they do most of their work around educating the public on prevention, it seems (I have not looked at their programs closely, though). I am sure that the causes for my son’s death could have been detected and addressed in time if there were more research into it.

  2. Juliet, the above link from Shauna has a lot of good information. First Candle is another group that works for stillbirth research.

  3. It’s hard, because no one wants to talk about the birth of a child. It’s too awful. So people don’t wan to hear about it. There are a few women who speak out about it, but I think in general it’s a taboo subject.

Comments are closed.