Stillbirth: Handling the Tragedy and Raising Awareness

Alan Goldenbach
Washington Post Staff Writer
Tuesday, July 7, 2009; 1:00 PM

Washington Post staff writer Alan Goldenbach was online Tuesday, July 7, at 1 p.m. ET to discuss how parents handle the tragedy of a stillbirth, how the medical community responds to it, what can be done to raise awareness and why awareness is so critical toward lowering stillbirth rates and chipping away at the stigma attached to it.

Even Doctors Avoid Talking About Stillbirth (Post, July 7)

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Alan Goldenbach: Thanks so much for your interest in discussing stillbirth. It is something I would not wish on my worst enemy, but with its alarmingly high rate of incidence, it is also something that bears discussion, which is what my wife and I noticed seldom happened in the immediate aftermath of our son's death. I am thrilled and flattered by all the questions I have received, both in this forum and through my email, and I promise to address all of them. If we run out of time during this chat, hit me on my email at goldenbacha@washpost.com and I'll be happy to discuss anything with you. Be forewarned, though, my technical knowledge of the subject comes strictly from the research of a concerned parent, and not a scientist. I'll do my best to answer everyone's queries. With that said, let's get going.

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Saratoga Springs, N.Y.: What can parents do to help raise awareness of stillbirths?

Alan Goldenbach: Let's start with a wide-open question like this one. Like any cause, the raising of awareness has to begin at the grass-roots level. The most important thing my wife and I did was ask question after question. When we didn't get an answer, we asked to be referred to someone who could give us one. It may sound like you're conducting an investigation in a vacuum, but with each person you speak, you are increasing dialogue about stillbirth. It takes someone with a really cruel heart to walk away from a conversation about stillbirth and not feel moved to do something about it -- whether it's getting others involved, or even just thinking to themselves about it, what it means and why it happened. When more people are talking about stillbirth, it relaxes the attitude of the conversation, softens the tone, and makes it more welcoming, even for those who might feel a little bashful discussing something so somber.

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Alexandria, Va.: My friend's son was stillborn about a month ago (when she was in labor). Obviously it's a heartbreaking situation. What can I do as a long-distance friend to help her through this difficult time?

Alan Goldenbach: I'm terribly sorry to hear about your friend's loss. Great question here, and one with which my wife and I have had plenty of experience. We both have friends and family scattered across the country, and they ran the gamut in their behavior toward us following the death of our son. I think the greatest offer you can make is to tell you friend that you are there for them whenever he or she needs you, and in whatever capacity he or she would like. I know there were times I didn't feel like talking to anyone, because people felt like they had to walk on eggshells around me. God forbid, they would mention someone else's baby or someone learn they were pregnant. Those aren't exactly soft topics for a couple that just endured a stillbirth. While I often curse email for its lack of a personal touch, it can be a terrific tool for communicating with someone who just suffered a stillbirth. It never hurts to send a little, "Hey, just checking in on you. Hope you're well," message. I know that without the support system my wife and I had, there is no way we would have made it through the initial grieving process. At the same time, I know people who were at my wedding who, more than a year after my son's death, still haven't said or even emailed anything to me expressing their sympathy. I think you have to make yourself available, but don't be pushy.

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Washington, D.C.: I am pregnant as we speak and I must say I really appreciate the article, even though it leaves me with one more fear that I can do nothing about.

At times I wonder if worries like these are the reason that sometimes I feel disconnected as if I don't believe there will be a baby until I am holding it in my arms.

What do you recommend that someone like me do? How does one better prepare for a possibility like this that they can do nothing about?

Alan Goldenbach: One of worst elements of stillbirth is the helplessness you're left with. I attribute that to the lack of answers we have for many stillbirths, for if we had them, we'd know for what to look out, and medical community could be a little more proactive. In the meantime, I wish you nothing but a safe, smooth pregnancy.

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Columbia, Md.: Thank you for writing this article. I have friends and acquaintances who have lost a baby at birth, and there are few events more heartbreaking in a person's life. Adding insult to injury, nobody knows how to deal with this type of loss, so often parents are left alone to mourn, and don't receive support from their loved ones and friends and community as do people whose children die later in life.

No question, just a plea for anyone who reads this to try to understand just how awful this is, and support any legislation that aims to prevent even one stillbirth. Thank you again.

Alan Goldenbach: Thanks for this sweet note. Your experiences, however, underscore how frozen we become when we encounter a situation. Like Jeanine McGrath told me, we struggle with death in this country. Funerals typically celebrate the life just lived. But what happens during a funeral for a life that was just on the verge of beginning? Jeanine also touched on something a little more tangible: when we have a stillbirth, who really saw the baby aside from the parents? I suppose it could be difficult for people to console someone about the loss of a person they never saw or knew anything about. When someone is grieving the loss of a parent or sibling, whom you might not know, at least you know the relationship, that it lasted a certain amount of time. Stillbirths often cause us to think about what potential was lost, rather than something we can describe more accurately. It's a difficult concept to grasp.

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Detroit, Mich.: Our son, William, was born still at 39 weeks on April 1, 2009 -- we couldn't find his heartbeat at a routine prenatal appointment. We had the placenta sent to pathology, and blood work done on me, but no known cause was found. The doctor didn't recommend an autopsy, and at the time, we were so in shock, we agreed. Now, I regret that decision. 40 percent of stillbirths go unexplained, and that is just an unacceptable number. The medical community, it seems to me, is willing to "accept" a 1 in 115 ratio of stillbirth deaths. Why? Who would get on an airplane knowing they had a 1 in 115 chance of not arriving at their destination? And more importantly, why is nothing being done to make it safer? How can research be done, or causes be determined, if every possible avenue of discovery isn't taken? Why aren't more doctors recommending autopsies on stillborn babies?

Alan Goldenbach: I'm so sorry to hear about your loss. To be honest with you, I was so stunned after the death of my son, that I didn't even immediately think of an autopsy (probably shows how I, like much of the U.S., didn't fully embrace stillbirth as a real "death" until then). Eventually, though, I gathered my senses and realized the most important thing to do next was to find out all the information I could so that this would never happen again. If that means conducting an autopsy, then that's what we'd do. If that means reading a whole bunch of literature that I didn't understand, then we did it. Ultimately, if couples learn that that they can never get pregnant again, so be it, though that's a difficult them to reconcile. I can assure you, though, it's better than having to go through a second stillbirth.

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U.S.: First of all, I'm very sorry for your loss.

I just wanted to touch on something that you mentioned in the article -- the way larger OB/GYN practices divide their call. I'm married to a physician, so I'm probably just especially sensitive to this, but it's incredibly hard on a doctor to be available for every delivery. Deliveries don't follow strict schedules, and as nice as it is to always have your doctor available, they deserve to have some time with their families as well. Spreading call over a larger practice is often the only way for an OB/GYN to ensure some semblance of a "normal" life.

Alan Goldenbach: Thanks for your kind words, and your understanding of the situation that doctors in large practices face. I don't think the solution to this problem is forcing doctors to be on call 24/7. Rather, I think communication among physicians in these large practices must improve dramatically to ensure that this is discussed somewhere in the pregnancy plan. As I wrote, there is a case of groupthink within these practices where each doctor knows this is an awkward and uncomfortable topic, and just assumes one of his or her colleagues will discuss this matter.

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Alexandria, Va.: First, I must say I am so sorry for your loss. I cannot imagine your grief, even though I came close to losing my son at 24 weeks due to preterm labor. Thank you so much for sharing your story and advocating for this important cause.

My questions: did you decide to name your son the name you had chosen before he was born? How did you handle acquaintances (or people who knew you were expecting but did not know of the death) who unknowingly asked about the birth?

Alan Goldenbach: Thank you for your kind thoughts. We decided to name our son (even though he never received a birth certificate), but it was not one of the choices we had considered over the preceding weeks. We decided to name him something that conveyed the loss of what could have been.

You bring up an excellent point, regarding handling stillbirth with acquaintances. My wife had much more experience with that than I did, since people grew accustomed to seeing her during her pregnancy. What she began telling them when they would ask was something along the lines of, "He didn't make it," or "He's gone." Since these weren't close friends, it's not like these were people who needed to know intimate details. Consequently, a short phrase like the ones above often got the message across just fine.

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Malta, N.Y.: Do you believe bills like the SUID Act of 2008 and the Missing Angels Bills will spark interest in stillbirth research or is something else needed?

Alan Goldenbach: Thanks for bringing these to the discussion. These are terrific resources because they take the discussion from the grass-roots level to the mainstream.

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Kensington, Md.: Thank you so much for your article about stillbirths. It was good to show Ms. McGrath's group so that people can see that they are not alone when they suffer a loss, and that there are groups out there. Losing an infant is a unique type of grief -- you have lost your hopes and dreams for this child and often, sadly, sometimes our society does not seem to know how to handle the grief. But feel free to tell people what you need and how you feel. If you are having a bad day, it is okay to admit that. Find a support group, seek counseling, get a network of family and friends that you can talk to.

As to the medical field, yes, it would be good to talk to patients during pregnancy about stillbirths; however, would we have listened? A saying in our support group is that the statistics are 1 in 160 -- we would take those odds. But when you are the 1, it is 100 percent you, and that is tough. But be your own best advocate with your doctor. Ask questions, request tests and let your doctor know if something just does not feel right.

Alan Goldenbach: Here's a good one on which to end. I cannot emphasize enough the value and comfort provided by a support group. I'll gladly admit that I was wholeheartedly skeptical when my wife suggested we attend one. As Jeanine McGrath said, "Why would you want to cry in front of strangers?" Further, I didn't want to discuss something that was so deeply personal with people I've never met. Here's the thing, though: these support groups show you that you are not suffering this miserable tragedy alone, that you have other people who can share their experiences, grieving and coping mechanisms and give you the comfort of knowing there is someone who can relate to you. Secondly, support groups can provide a forum to gather some steam to promote discussion about stillbirth. It's human nature to be hesitant to support a cause alone. When you have company, you feel more confident. That's how awareness gets raised. That's how research is triggered. That's how, perhaps, stillbirth rates can decrease.

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Alan Goldenbach: It's time for me to sign off, but I want to thank everyone again for their questions, kind words and frank discussion. As I mentioned earlier, since this is clearly a story close to my heart, I'd like to be able to answer everyone who logged on and sent a question. If I didn't answer yours, or if you'd like to chat further, feel free to find me at goldenbacha@washpost.com. Thanks again for reading the Post.

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