MICHEL MARTIN, host:
I'm Michel Martin, and this is TELL ME MORE from NPR News. Coming up: Obama, Gates and race. It's my Weekly Commentary, and that's in just a few minutes. But first, it's time to go Behind Closed Doors. That's the part of our program where we talk about issues that are often difficult to discuss.
Today, we take a look inside the delivery room. Preparing for the birth of a child can be one of the most joyous times in a family's life. But for thousands of women and couples every year, stillbirth can turn that joy into tragedy with little warning.
The Centers for Disease Control and Prevention estimate that more than 25,000 pregnancies end in stillbirth every year. And what's even more devastating to many parents is the silence from friends, family, even medical providers, about the loss.
Writer Alan Goldenbach is working to end that silence. He's a Washington Post reporter who recently wrote about his and his wife's loss of a child in stillbirth.
Also with us is Sherokee Ilse. She is the author of several books, including "Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death." She has been working to raise awareness about stillbirth internationally after she suffered one herself in 1981. Thank you both so much for joining us.
Mr. ALAN GOLDENBACH (Reporter, Washington Post): Thanks for having us, Michel.
Ms. SHEROKEE ILSE (Author, "Empty Arms: Coping with Miscarriage, Stillbirth and Infant Death"): Thank you.
MARTIN: And I do want to say I'm very sorry.
Mr. GOLDENBACH: Well, thank you. That's more than what some other people (unintelligible)…
(Soundbite of laughter)
MARTIN: Yeah, it's true. Miss Sherokee, can I start with you and ask: What is stillbirth, and how is that different from miscarriage?
Ms. ILSE: Well, stillbirth is defined in the United States as 20 weeks and over during pregnancy, when someone has a birth where the baby has died in utero, while Mom is still pregnant, and a miscarriage would be prior to that.
There are some people who say, what is a miscarriage but an early stillbirth. But for today, we'll be talking probably about 20 weeks and over. And most stillbirths occur close to term, close to the 40 weeks, somewhere between that 36 and 40 weeks.
MARTIN: And this is the point at which you're showing, you're telling people, getting the baby's room ready. Alan, if you would, tell us your experience.
Mr. GOLDENBACH: Yes. My wife and I lost our son the day before he was supposed to be delivered. He was supposed to be born on February 9th, 2008, and during just a routine morning checkup, the doctors just came in, did a little check-up. And I'll never forget the intern's voice, who said, I won't lie to you, I'm not detecting a heartbeat. And it's one of those most sinking, helpless feelings you'll ever hear because there - you know what that means. No heartbeat means no life. And you say, what can we do, what can we do? You're past the point of what can you do.
MARTIN: And was there any I'm sorry? Was there any sense of what this would be like for you to hear this news?
Mr. GOLDENBACH: It hits you like a ton of bricks. It's in such a quick instance that you really have no - you have no time to prepare for that. You're thinking, like, when somebody asks me, well, you know, should I do an autopsy, I mean, I'm not thinking of an autopsy at that moment. I'm not thinking about what caused this. I'm thinking about, oh my God, this just happened, and what do you do next? You don't think about what you do next; you think about what just happened.
MARTIN: You know, you wrote in your piece that you and your wife had read voraciously about prenatal health - not uncommon these days. The literature didn't mention stillbirth. And yet, as you point out in your piece, stillbirth is far more common than sudden infant death syndrome, which is much-discussed as a public-health issue, certainly something parents are educated about by health-care providers. It is far more common than Down syndrome, which many expectant parents are educated about.
There are many more deaths in this country from stillbirth than from HIV/AIDS, and yet when you asked your doctor about why this was never even discussed as a possibility, what did your doctor say?
Mr. GOLDENBACH: She looked at us and had these really, like, droopy, sheepish eyes, like oh, I'm sorry, and what she said was, pregnancy is a happy time. You don't want to hear anything bad, and certainly much less anything about death. And I mean, we wound up - I mean, that was the first question we asked her, how come we didn't hear anything about this.
The conversation carried on for about another 45 minutes to an hour in her office, and throughout the entire time, I kept on going back to just, my God, that really ticks me off that, you know, just because this is a happy time, you can't discuss something that's, while it might be bad, it's a fact, and it's a possibility.
MARTIN: And I think one of the things that's important about having the two of you together is that Alan - his wife's experience was very recent and I think we often tell themselves, oh well, you know that was back in the day when people didn't talk about these things. We talk about everything now.
Sherokee, you've been writing about stillbirth and pregnancy loss since you experienced miscarriage and stillbirth yourself in the late 1970s and early '80s. And I just wanted to ask if Alan's experience resonates with you. Was it similar?
Ms. ILSE: Well, actually it was very similar, which is quite sad to me that -I've seen great progress, don't get me wrong, in how we handle the memories and saying hello and all of that, but a friend of mine just did a study that'll soon be published. And she found, when she interviewed over 650 parents, that 11 percent were told by their doctor anything about stillbirth. We have been raising awareness for almost 30 years now. In October, we have Pregnancy and Infant Loss Awareness Month. We've tried to get articles in papers and it's very sad to me that still in, you know, 2008-2009 we have this kind of silence.
MARTIN: Why do you think that is?
Ms. ILSE: If you'll think about stillbirth, the word stillbirth, there's nothing about death in there and so there's a part of me that wonders if even our words are to hide what this is. There's the abortion issue, which complicates things. You know, is it a life? Isn't it life? Not to judge that -I'm not even talking about judging that right now. I'm just saying, does that complicate it in people's minds? And then just the devastation that I think doctors and nurses feel when - and parents - when we couldn't stop it.
Mr. GOLDENBACH: There's just one other variable to add to the equation, and that is that there's no answer.
Ms. ILSE: (unintelligible)
Mr. GOLDENBACH: We'd like to have an answer in every - in our medical community for everything. I mean, even with a disease as awful as HIV and AIDS, at least we know this is what we have to attack. And we don't have any clue. We're going in a dark tunnel when it comes to stillbirth.
MARTIN: You are listening to TELL ME MORE from NPR News, and we're talking about stillbirth. We're talking about the loss of a child very close to delivery. And our guests are Washington Post reporter Alan Goldenbach, who recently wrote about losing a child to stillbirth, and Sherokee Ilse. She's the author of "Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death."
And I wanted to ask each of you, let me try to - this is really hard, and I just wondered how you are able to put your story out there.
Mr. GOLDENBACH: I've always said the first domino to fall is getting the word out, is making awareness because the awareness triggers the research. When you have people saying this is a public-health crisis, this is a public-health issue that merits serious attention, that's when resources are driven towards research. And that's what I felt. I was stunned in the months right afterwards, when my wife and I were just - still just shell-shocked and numbed by the facts of what happened. We started doing research, and the first thing we came upon is what - how little this was discussed.
MARTIN: Sherokee, talk to me about your experience.
Ms. ILSE: Thank you for asking, Michel. I had had a miscarriage, my husband David and I, and then a year and a half later perfect pregnancy - like Alan and his wife - all the way to, well, in our case one day later than him, due date. And the baby had slowed down. I thought that was normal, and that is not normal. They should not be slowing down. And went into be checked and they too told us that devastating news that the baby had died. We saw him briefly. No one else in our family did. We did not understand the importance of making him real to other people, and we named him Brennan(ph). We didn't take any pictures. We didn't get any mementos and so I made it my mission, when I wrote "Empty Arms," to get that book in every hospital to say to families, like Alan, you're devastated. You don't know what you need to do, but let me tell you what I regret that we didn't do, and encourage them to understand why they need to do these sorts of things.
So my mission for the last three decades has been to make this a better situation for families so at least they don't have regrets and, like Alan, to open up this door of silence and say, we need to be studying this. And I am on a board, the International Stillbirth Alliance, and we are all about research to figure out what some of the reasons might be that these babies are dying.
MARTIN: There are those who would say, though, that this is - that death is part of life and that we, part of it as Americans, is that we just deny and are not in touch with all of the cycles of life, for whatever reason, that we're in denial about it and I don't know...
Ms. ILSE: Well, that certainly is true. We are real good at denying it. But if you think about it, you get on an airplane and they tell you in case of an emergency do this, this and this. They tell us to wear our seatbelts, that - to cut down on deaths. You know, they tell us to lay our babies on their back, not on their front, to cut down on SIDS. Why aren't they telling us to watch for movement at the end of a pregnancy, to go in if you have any concerns? Why aren't they telling us more about this? And so, Alan is definitely on to something. And the good news is programs like this as well as the two bills that have just been introduced into the legislature, by Lautenberg in New Jersey and another senator from New Jersey, we have a chance now to get some actual dollars for awareness and for research and for gathering statistics, and so there's some excitement about that.
MARTIN: Alan, speaking of this legislation that New Jersey Senator Frank Lautenberg is heading, an effort to pass the Preventing Stillbirth and Sudden Unexpected Infant Death Act. What would this do; what's in this legislation that might be helpful?
Mr. GOLDENBACH: Well, what it would do is, it would initially just start collecting data on stillbirths. Right now, what we do when we have a stillbirth is we just, the doctor just comes and says, I'm sorry, this is what happened, and then it's just tossed aside. We don't really confront why this happened. Let's examine what happened. Let's do an autopsy. Let's examine the mother's medical records. This will direct some research to gather this data.
MARTIN: And Sherokee, can I - and I'm going to ask each of you this - is, what's your word of wisdom for people confronting this? I mean, Sherokee, you've obviously written books about this, but just - could you just get us started here? What are - some advice that you would offer to couples who are experiencing this, and also to the people who love them and care about them and want to do right by them?
Ms. ILSE: Well, for the couples who've experienced this, I would say embrace it, as hard as that may be. Love your baby forever. Cherish those mementos. Talk about it even if people are uncomfortable because in order for us to heal, we must grieve.
MARTIN: Alan, what about you? Did you - were there things that you needed, that you and your wife needed, that you felt, in a way, you had to fight with people about?
Mr. GOLDENBACH: The one thing that I could tell friends and relatives of people who've suffered a stillbirth is just to extend your arm. Just say, I'm there. Just say, I'm there. Whenever you're ready, I'm there. Don't try to force yourself on them. Don't try to say, well, maybe I should step away, maybe I shouldn't do this. Don't assume what the people need at that time. Just say to them, I'm here for you.
MARTIN: Alan, let me ask you...
Mr. GOLDENBACH: Sure.
MARTIN: ...if you don't mind my asking, how are you doing now?
Mr. GOLDENBACH: I'm doing great. We're doing great. It's now a year and a half afterwards and just three weeks ago, my wife and I just adopted a baby girl...
MARTIN: Ah, mazel tov.
(Soundbite of laughter)
Mr. GOLDENBACH: ...and we could not be any happier. I always, I told friends in an email, I never knew what the happiest day of my life was going to be. I always wondered what that was going to be. And when we brought our baby girl home, I knew exactly what that day was.
MARTIN: Oh, wonderful. Congratulations.
Ms. ILSE: And I'd like to comment on that. Sometimes people think that having that live baby in our arms makes everything all better and go away. That is not the case. We are reminded of who is missing in our joy, and so it becomes kind of a bittersweet experience. And all I want to say to the family and friends is, don't put all the eggs and hopes in the basket of a live baby as that is the answer. Yes it helps so muchb and it can become the highest point in our life. But at the same point, it reminds us of who we wish we also had in our life.
MARTIN: Well, Sherokee, are you doing?
Ms. ILSE: Oh, I'm doing really well. I'm continuing this mission and it's so exciting for me, and my days are filled with more joy and hope than they are sadness. But as I say, I still think about my baby who wouldn't be, and I still find tears once in a while. But that's a part of my normalness as I go forward.
MARTIN: Sherokee Ilse is the author of "Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death." She joined us from St. Paul, Minnesota. Alan Goldenbach is a reporter for the Washington Post. He recently wrote about his and his wife's experience with stillbirth for the Post. If you want to read the article he wrote in its entirety, we'll have a link on our Web site. That's the TELL ME MORE page at NPR.org. My very best to all of you and your families, and I thank you so much for joining us.
Mr. GOLDENBACH: Thank you, Michel.
Ms. ILSE: Thank you.
MARTIN: Tomorrow, in a special mom's conversation, we'll hear from a medical expert about why mothers of color are far more likely to suffer from stillbirth. You can also find an excerpt from Sherokee Ilse's book, "Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death," on our Web site. That's the TELL ME MORE page of the new NPR.org. Transcript provided by NPR, Copyright NPR.