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Zuckerberg Helps Destigmatize Miscarriage: These Women Share Their Stories Too

This article is more than 8 years old.

In perhaps the sweetest post Mark Zuckerberg has ever posted on Facebook, he announced that he and his wife Priscilla Chan are expecting a baby daughter. What makes Zuckerberg's post so remarkable, however, is that he shares the fact that their pregnancy is actually their fourth — the first three ended in miscarriages.

That Zuckerberg would share such private information is not on its own surprising: he has long shown through his statements and sometimes through his Facebook policy decisions that — for better and for worse — he foresees a future in which little personal privacy exists. Posting this detail is in keeping with his overall belief in “sharing.” Yet it remains remarkable because of what it does: continue to destigmatize an extremely common experience that countless parents have grieved yet suffered in silence. And yes, they are parents, regardless of whether they ever had another child.

An estimated 10% to 25% of all pregnancies will end in miscarriage, defined as a pregnancy loss before 20 weeks gestation, and an estimated 1% of all pregnancies end in stillbirth, defined as a pregnancy loss after 20 weeks. How many parents is that? In a study this June in Obstetrics & Gynecology, 15% of the approximately 1,000 respondents (half men and half women) reported that they or their partner had at least one miscarriage. (Interestingly, I could not find a statistic for how many women have had at least one miscarriage – as opposed to the rate among all pregnancies – which reveals just how understudied miscarriage is. We don’t even have a clear handle on how many women go through this experience.)

Yet for how common it is – one in five pregnancies – there is a great deal of misunderstanding and stigma surrounding pregnancy loss. As I reported at the time, more than half the respondents thought that miscarriages occurred in fewer than 6% of all pregnancies. Although the vast majority knew that most miscarriages occurred due to a genetic or medical problem out of the control of the parents, a similar proportion believed – incorrectly – that stressful events and longstanding stress could cause miscarriages. Other common misconceptions were that lifting heavy objects, having a history of an STI, having used an IUD or birth control pills or getting into an argument could cause pregnancy loss.

It’s no wonder, then, that so many women feel responsible for their loss – nearly half (47%) of women felt guilty about their miscarriage, and two out of five felt they had done something wrong. The findings further highlighted how stigmatized, painful and lonely the experience is: more than a third (37%) felt they had lost a child, 41% felt alone and more than a quarter (28%) felt ashamed. Even when a cause was identified for a miscarriage – which is rare – one in five still felt they had done something wrong.

The suffering of these women – and their partners – should not be silenced. Just as we seek condolences for losing a parent or friend or a child who was live-birthed, it needs to become just as normal and accepted for us to share and grieve communally for lost pregnancies. The pain is just as real and lasting. A quarter of the women in this study felt they had not received adequate support, but here are two particularly important findings: more than a quarter (28%) felt less isolated when they found out a celebrity had experienced a miscarriage – way to go, Zuckerberg! – and nearly half (46%) felt less lonely when friends said they’d had a miscarriage.

In the that spirit, then, I have asked women in my networks, primarily Facebook groups, to share their experiences. These are edited for length, but the idea is to share how common this experience is, how painful it is, and yet, as Zuckerberg's post implied, that there is hope, both in moving past the acute pain of the loss and (usually though not always) in eventually celebrating the joy of having a child. I have the deepest gratitude toward these women who have opened up, some of whom were comfortable with their full names shared and some who were not. Please be warned that some of these may contain graphic details. Several refer to a D&C, explained here. (Note: I have continued to receive responses and will add these as I receive them to my parenting blog here.)

Feel free to continue the sharing in the comments. The more people speak up and are heard, the less stigmatized this experience can become.

Allison Smith, age 46, Boston: “I had my first miscarriage after almost two years of trying to conceive. We had worked hard to prepare for our family, completing graduate degrees and buying a small house in a good school district with plenty of walkable resources for kids, such as the public library and YMCA. We have a very large extended family, with five generations living. It was unthinkable that we might not have children. We were thrilled that our first IVF cycle resulted in pregnancy, but soon discovered that it was non-viable. We had pretty much kept our infertility treatment a secret, so when I found out that the baby wasn't to be, I was shattered, and there was no one to pick up the pieces. I even went to work at my new job every single day, insisting that the multiple visits to my doctor for serial blood work, ultrasounds, two methotrexate injections, and ultimately a D&C be done at off hours so that I never had to explain that I was dealing with what was, in fact, a life-threatening condition. I went on to have nine more IVF cycles, another pregnancy loss and ultimately three children. It was immeasurably easier to get through it all once I opened up to others about it. Some of the kindest support came from very surprising sources. I have gone on to become quite vocal about our diagnoses, our losses and the miraculous process by which we actually became parents in order that others on the same path may not feel so alone. I commend Mark Zuckerberg and Priscilla Chan for using their social network to do the same.”

Denise Giffin, Goose Creek, South Carolina: “I have been pregnant eight times, with two surviving children. I've had six first trimester miscarriages ranging from 6 weeks to 11 weeks, with four D&Cs. Miscarriage is the one type of loss in our society that isn’t considered acceptable to mourn publicly. Since my first one, I have tried to openly share my experiences via social media and personal conversation to help other women feel that it’s perfectly okay to feel whatever they’re feeling in regards to pregnancy loss. I’ve had several friends confide in me that they had also had lost pregnancies after I had opened up about my own experiences. I really feel it’s important for us as a society, and as women specifically, to break through that social stigma and support each other in what can be one of the most painful and life-changing experiences anyone can experience.”

Pamela Elliott, age 38, Austin, Texas: “Despair set on pretty instantly once we didn’t see a heartbeat and the tests indicated it was a missed miscarriage. I didn't realize while I was ‘in it’ that what I experienced next was classic denial. I wanted so desperately to skip the entire grieving process. I learned very quickly that the steps of grieving are both physical and emotional, and they have to be contended with. Nobody is above having to confront each step. At my final appointment with my OB, to make sure the D&C was complete, I finally could say to myself, ‘I still want to be pregnant. Why can't I still be pregnant? I wanted that baby so badly.’ The denial flood gates finally broke, and true acceptance and healing began. My body knew the pregnancy was not viable, and it was a blessing it ended the way it did at 8 weeks. I can say that and really mean it now, a year later. I went on to get pregnant again and am about to have another little girl.”

Christina Rosbury, age 27, Kingwood, Texas: “I’ve had two miscarriages and then the stillbirth of my second son. One miscarriage was almost 8 years ago; then I got pregnant with my oldest over a year later. Then, when my son was 9 months old, my husband deployed. He came home a year later, and I got pregnant again. We lost that baby. Then two years later, I got pregnant with Levi. I worked so hard for those two years to be healthy and fit. All was good until his 20-week anatomy scan. It was there that our lives changed forever. We found out he had congenital diaphragmatic hernia, which means either there’s a hole in the diaphragm or it’s missing. When that happens, the organs get into the chest. It makes it difficult for the lungs to develop. Levi also had heart defects. He was given a less than 5% chance at surviving. So we decided to go to Texas Children’s in Houston to save him if he was born alive. Unfortunately, he wasn’t. He was stillborn March 7, 2014. I kept him with me for 36 hours. The hospital was amazing about putting me in a wing of the hospital where I wouldn't hear babies cry. They took pictures and hand/foot molds. I got pregnant with my daughter 7 months later. Thankfully she is healthy and alive."

Jennifer M., age 34, Columbia, Maryland: “I had a loss at 8 weeks after trying to conceive for a long time and was devastated. What made it worse, though, was how cruel my doctor's office was about the miscarriage. I'd already had the ultrasound confirming that the pregnancy was over. The sac was empty, things were disintegrating, and there was no hope. I'd bled all day and all night afterward. Cramping, crying. I sat in the waiting room at the OB's office, staring with desperate focus at my hands so I wouldn't have to look at the bellies around me. The doctor told me I could try and pass it all on my own, or I could have a D&C. I was afraid of the surgery, afraid of going through that cold clinical trauma, so I went home and waited for my body to figure it out. I'd never felt so much pain. I thought I was dying. My doctor had prescribed ibuprofen, but it did nothing. My husband was at work because I'd foolishly told him it was silly to stay home. I lay on the floor, sobbing, dialing my OB's office and begging him to help me. ‘Try a heating pad,’ he told me. ‘But this pain, this is so much pain, why didn't you warn me of the pain?’ ‘Most women can handle it fine with Advil. If you can't take the pain, I guess you can go to the hospital.’ I was given no better pain medication, offered no counseling, no compassion. Three weeks after it was all over, I got an automated phone call reminding me to come in for my 12-week ultrasound appointment, and I sat in my kitchen and cried.

Months later, I wrote a letter to that office. I told them that they had no right to claim ‘comprehensive pregnancy care’ if they didn't have a counselor available to help women cope with loss. I met with the director and my OB, who remained arrogant throughout, and I demanded that they fix things so that nobody else would have to suffer as I did. They now bring women back to an exam room immediately when they're there for a miscarriage-related appointment. They have a booklet with names of therapists and counselors – which I provided them – that they now give out to patients who have lost a pregnancy. It's a start. But I'll still never be back.”

Jenny Short, age 34, Edmonton, Canada: “I had my first miscarriage at 19. I had a friend who had a infant, and for mouths I wasn’t able to hold the little girl without crying. The next one, I was 27 and in a really toxic relationship; as awful as this might sound, I was almost relieved because that man wasn’t what a child needed as a father. But at 30 years old, I met the man of my life. Two years later, we got married and conceived during our honeymoon. It was perfect: I was with a wonderful man, we were happy and I was ready. And then one day I was working in northern Alberta in a oil sand camp, and I started spotting. So I went to see the on-site medic, who transferred me to the hospital. A few hours later, hubby was by my side and the ultrasound confirmed that our little giraffe didn’t have an heartbeat.” Short’s 8-week pregnancy was too early for a D&C so she had to take misoprostol. A few hours after taking it, she felt pain but did not make it to the rest room quickly enough. “This was terrible – I knew that the tissue and blood on the floor was my little one, and I couldn’t get myself to pick it up. So I just sat there on the floor, cramping and crying. My husband took care of cleaning the mess. The next few weeks were hard for me. Miscarriage doesn’t get easier even after many. For me, it was harder. And the fear… what if I can’t ever finish a pregnancy? During my whole pregnancy with William, I had fear with every cramp. We always wanted two kids, a boy and a girl, and I’m a little scared – what if I have to go through this again?

Too many women, and also men, have to deal with this issue, and it needs to be talked about more. They are so frequent. After my third one, I had so many people telling me they went through this too. People need to be able to talk about it and let feelings out. I am in a Facebook group of moms who had miscarraiges/stillbirths, and what I read from most of them is that they want to talk about it about how sad they are and how much they would like a baby in their arms, but their family or life partner always shut them down. We hear a lot of “Oh come on, get over it. It’s been six months,” or “Well, you aren’t the only one who lost a child, but life goes on.”

Amanda Karen: “This is such a difficult topic. My son is pregnancy number 5, and I lost four more after him. So I had eight miscarriage in total, with four resulting in D&Cs. I would love to see more attention paid to this issue that impacts so many. It's a very lonely thing to go through. People get very uncomfortable talking about it. You aren't really encouraged or supported in the mourning process. Mine were all first trimester losses. I did see and received testing through an reproductive endocrinologist that specializes in recurrent loss, but they never did figure it out. I eventually gave up on the idea of a second child, and as grateful as I am for the one amazing child I have, I still feel like something is missing. It was a very hard journey.”

Alison Deli, Rockville, Maryland.: “I got pregnant on the first try and miscarried at about 9 weeks. I took it in stride and got pregnant very quickly with my daughter and had a very normal pregnancy and a very healthy baby. Then I got pregnant about two years later and suffered another miscarriage at about 13 weeks. That one was more devastating as I had three close friends who were pregnant too, and we were all due around the same time. I felt so alone. My husband was very sweet but became frustrated with my sadness. I watched my pals go through their pregnancies and hid all my anguish to protect their feelings. And they often treated me as if what I had was catching. I cannot tell you how horrible that was…

I became pregnant again several months later and that was a joy. Like with my daughter, my son was born after an easy pregnancy. I ‘accidentally’ became pregnant again when he was about 13 months old. I didn't realize I was, and honestly, when I found out at about 9 weeks, I was unhappy. I was exhausted by a toddler and a baby and did not embrace the pregnancy at all. At my 15-week check up, there was no heartbeat and I had a D&C. I felt such tremendous guilt that somehow this was my fault. Clearly that wasn't true, but I wasn't logical and beat myself up. The guilt was enormous. I became obsessed with my other two kids and with trying to be perfect for them. After a month, testing came back on the fetal tissue which showed an abnormality. It was a rare tripling of the 8th chromosome, which was most likely the cause of the other two losses. The one positive that came out of that was that I realized I really did want a third child and became pregnant again several months later. I gave birth to another healthy boy who truly completed our family. I met recently with an OB who specializes in miscarriage, who told me that about 5% to 8% of women will have a loss like mine before each and every term pregnancy. There is no known reason at this time.”

Holly MacNabb, age 34, Omaha, Nebraska: “I struggled with infertility for all adulthood. I've had five miscarriages out of nine pregnancies. They all are devastating regardless whether they occur at 6 weeks or 4 months in. What hurts even worse is some people’s comments. I heard lots of ‘You're young, you can try again,’ ‘that baby wasn't meant to be,’ and sometimes even well meaning stuff like ‘God called them home,’ or ‘You have an angel watching over you.’ None of that ever brought me any comfort. A simple ‘I’m sorry for your loss’ was always the most perfect thing I could hear — something that showed you sympathized with me and cared. I didn't need rationalizations or anything of that sort. Just an ear and some compassion went a long way.

Just as bad is that if you do get pregnant after a history of losses, you don't go in with all the glee that a lot of mothers have. You count down the days until you leave the first trimester. Then until viability. You go into this pregnancy very guarded. I went in looking to lose the baby always. Every cramp, twinge or feeling was certain doom. It's very exhausting to wake up every single day and be afraid that'll be the day that you start to lose the baby. I was never comfortable until the day baby was born and in my arms. It's awful to feel as if your body is a war zone instead of a safe haven for babies. Miscarriages leave this lasting impression on you that doesn't ever go away. Not even after you've had a baby, or one, or two. It's always there.

With my fifth miscarriage I’d recently started a new job. About 6 months after getting the job, I got pregnant. At about 5 weeks hyperemesis gravidarum struck. I spent all my waking hours vomiting or taking meds trying not to. I took that as a good sign that maybe we'd meet our third child! Unfortunately, I was using quite a bit of sick time. The management was understanding and made concessions for me. Then I started to lose the baby at about 9 weeks. I was devastated. I called the management to tell them I wouldn't be in because I was losing the pregnancy. Their understanding nature seemed to have melted away. They seemed actually happy I was losing the baby. They commented that my pregnancy was a hardship on the other employees who were having to pick up the slack for me. I expected to hear an ‘I’m sorry, take all the time you need,’ not how this was a good thing because things could go back to normal! I was speechless. My manager told me he'd see me tomorrow and that this would make it so I could get back on the track to promotion I was previously on. ‘See me tomorrow.’ He certainly didn't understand I'd be in severe pain and in no shape for work. I didn't feel I could argue because he'd already made it clear my pregnancy had inconvenienced them and I was to be there tomorrow. So I went into work the next day in the middle of a miscarriage. It was awful. I spent much of the day trying not to cry and still running to the bathroom to vomit. Cruelly enough, the pregnancy symptoms don't resolve right away. They can take days and even weeks after a miscarriage to go away. Everyone knew what was happening and no one said a word. No talk about pregnancy anymore and certainly no talk about the miscarriage. Not even a single ‘sorry for my loss.’ It was just as if it didn't happen.”

K.K., age 36, Colorado Springs: I have been pregnant five times. My first pregnancy was a breeze, and we had a healthy baby boy. Two years later when I again found myself pregnant within a month of trying, we assumed it would be more of the same, but this one didn't go quite as expected. We found out that the baby had died around 9 weeks. Honestly, I think more than anything, we were really just shocked. Everything had been so easy the first time.

About four months later, I found myself pregnant again. We were excited to hear the baby's heartbeat at our 12 week appointment but weren't offered a 12-week screening ultrasound because I was young and low risk. When we went in for our regular anatomical ultrasound at 18 weeks though, I could immediately sensed something was wrong although the ultrasound tech never said anything. My doctor said there had been some abnormalities noted with the baby's brain, deemed incompatible with life, and we were left to decide which was the less heartbreaking of equally gut-wrenching scenarios. Ultimately, we decided to terminate the pregnancy at 20 weeks. I think even when you know that your baby will die no matter what you choose, there is guilt associated with that decision, and it was difficult to really grieve properly because you're also dealing with these feelings of having betrayed your child as well as feelings of shame, wondering if there was something you did or could have done differently to have changed the outcome.

I became obsessed with getting pregnant again. My doctor recommended waiting three months, but six weeks later I was already pregnant again. I miscarried again around 8 weeks. At this point, we just felt defeated. My confidence in myself and my body was shot, and it was difficult to find anyone who really wanted to talk about it. I think what got me through a lot of that time was having really, really good doctors. My perinatologist was amazing, and when I found myself pregnant again with my daughter six months later, he did everything he could to help me believe that my body could achieve a healthy pregnancy again. Looking back on holding my daughter in my arms at the end of that nine months… it felt like the end of a battle. I had changed in immeasurable ways, I had lost much but had won something incredible.

Pregnancy loss is an important topic because it is so common, and loss is something that binds us together as human beings. My losses have really changed who I am on a fundamental level, and it's easier to empathize with those changes in others if you know the driving force behind it. Loss is very personal, and while some are more comfortable experiencing it privately, women shouldn't be ashamed for wanting support. I think there are those out there who consider pregnancy loss to be to the loss of something intangible and therefore almost not worthy of grief, but I can tell you, when it is your body and your baby, it is very tangible and should be treated as such.

The best way to support someone going through pregnancy loss is just to be willing to talk about it if they want to. It is much easier for me to talk about my losses now that quite a few years have passed, but whenever I know someone has experienced a pregnancy loss, I just try to gently open that door so they know it's open if they ever need to walk through it.”

G. S. B.: “I’ve miscarried four times, and they were all different and traumatic in ways I couldn't express publicly. My first miscarriage was two days after my husband lost his job. He didn't know I was pregnant yet. I was was 6.5 weeks, and I sat in our apartment sobbing both from grief and relief because I didn't know how we would handle a baby without him working. Three and a half years later, my oldest was born. Life was great. Then we tried for another and had two miscarriages in six months. I was devastated. I got pregnant again, took progesterone and he stuck, born at 35 weeks. We decided two was enough. When E was 9 months old, I was scheduled for my IUD. I'd never had a period, so they made me get a blood panel. I was pregnant and pretty far along. I stood in the bathroom and cried because I wasn't ready for another baby. I went to the doctor later that week. There was no heartbeat. I honestly felt relieved. Then she said ‘Wait, you aren't 9 weeks along; there are 2 sacs.’ I cried. I can't explain the emotions.

I started spotting. Still no heartbeat. I went back every three days. I had a new job and didn't want to be pregnant. I had blood work and the last ultrasound scheduled for a Wednesday and would have a D&C the following Friday unless they found a heartbeat. The tech found a heartbeat — two to be exact, but one was significantly smaller than the other. We officially lost Cora's twin around 9 weeks. I was sad, but I was also relieved. It's not generally accepted to say that, but three children under 5 was unexpected and four was overload. Cora was our unplanned daughter. We were done after the 2 boys. Every time I look at her, I'm so thankful she joined our family and I wonder about her twin. In a lot of ways, I feel more connected to her. I was a twin, and my mom lost the other twin early. When I look at Cora I find myself looking for her twin too.”