My entire life changed in 10 minutes.
I was 13 weeks pregnant with my first child, excited to hear my baby’s heartbeat for the third time. The ultrasound technician probed my stomach as I chatted with my husband and told me she’d be back with the doctor. I knew something was wrong when I saw the look on the obstetrician's face.
There was no heartbeat. The baby had a devastating neural tube defect called an encephalocele, which means that the skull didn’t form properly and was protruding. In the weeks to come, I’d learn a lot more information thanks to advanced testing. The baby was a boy. The defect was caused by trisomy 18, a rare chromosomal condition. There’s nothing I could have done differently to save him.
A million things raced through my mind as I listened to a genetic counselor gently explain our next steps, and one thought came to the forefront.
I had gleefully shared a pregnancy announcement on social media after hearing the baby’s heartbeat. The odds of miscarriage were less than 3 percent at that point. I assumed I was in the clear.
What would I say now?
My husband, Vagner, and I started talking about babies a few months after our wedding. We wanted to start a family, but we lived in a one-bedroom apartment and didn’t have much. It made sense to wait.
We shelved baby talk and checked items off our bucket list instead — buying a home, starting a business, vacationing in Europe. In early 2019, we decided to get serious about pregnancy. We were still young — I was only 25; my husband was 26 — but we knew what we wanted.
When I first saw the positive pregnancy test, I felt afraid. It was welcome news, but I immediately worried we weren’t ready. My fear faded and excitement took over once I showed the test to Vagner. We used a smartphone app to calculate my estimated due date: December 23, 2019. We were going to have a Christmas baby.
Vagner wanted to tell everyone we knew right away, but I cautioned him to wait. Like most women, I knew those who lost their babies in the early weeks of pregnancy. I told people I wasn’t feeling well and skipped specifics if I stayed home from events or missed a day of work. Conventional wisdom says to keep quiet about your pregnancy until the 12-week mark, when the risk of miscarriage drops.
But if no one knows you’re pregnant, who do you turn to when things go wrong?
I left my doctor’s office and began to prepare for surgery on the same day. I’d have a dilation and curettage procedure to remove the fetal tissue from my uterus and they’d send it to a laboratory for testing.
I woke up the day after that appointment hoping it had all been a dream, but my cramping and bleeding reminded me that it was real.
I texted close friends and family members as I waited in pre-op, sending variations of the same message: “The baby died. Fatal birth defect. We are devastated but will eventually be okay.”
Then it was time to tell the world. I briefly considered providing a curt update and logging off the internet for a few weeks, but I realized that I wanted people to know the details.
I’m a freelance social media manager and also have a blog with a decent-sized following, so social media plays an important role in my life. I share all aspects of my life online — it’s not for everyone, but I enjoy being authentic with the people who follow me. And this time, I needed everyone to understand the gravity of my loss.
I knew woefully little about miscarriage before it happened to me. The chances of trisomy 18 are low. Per the National Institutes of Health, the condition occurs in roughly one in 2,500 pregnancies. But pregnancy loss is startlingly common — according to the Mayo Clinic, 10 to 20 percent of pregnancies end in miscarriage.
Chances are, you know someone who has experienced the agony of losing a pregnancy. And chances are also good that you know someone who has never talked about it.
Despite those numbers, a 2013 study from the Albert Einstein College of Medicine and Montefiore Health System showed that a majority of survey respondents thought miscarriages were uncommon.
Many of those surveyed also incorrectly thought that lifestyle choices, stress, lifting heavy objects, past use of birth control and other preventable things were the leading causes of miscarriage, when in fact genetic problems are.
So it’s probably no surprise that in the same survey, many of those who had experienced a miscarriage reported feeling guilt or shame.
I first shared news of my miscarriage on Facebook and Instagram out of necessity — I needed an efficient way to let thousands of people know that I wasn’t pregnant anymore — but I continued posting regular updates about grief because it was cathartic.
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“IT’S A BOY! 💙” ⠀ ⬆️ That’s what I always pictured myself writing. I never imagined that I’d be sharing this news with sad tears in my eyes, but we now know that we have a son in heaven. ⠀ Neither of us really cared about the sex, so we almost skipped prenatal testing — why would two healthy 20-somethings need their baby screened for disorders? It was partially covered by insurance, and it’s a praise that we went for it. We now know that our babe had #trisomy18 which caused his fatal birth defect and several other problems — and we know that he was a boy. ⠀ We’ve argued over baby names for years, but naming Jedidiah David was easy. We never knew him, but we know that he was loved so much. By us, by our families, by strangers. ⠀ Jedidiah: “beloved of the Lord, friend of God” David: “dearly loved” ⠀ I hate that I’ll never hold him or put him in a onesie or argue with him once he’s old enough to sass me, but I love him all the same. Your mama misses you, Jed. 💘
Sorority sisters from college. Ex-colleagues. Friends from high school. Fellow congregants at my church. Complete strangers. My digital inbox quickly filled with messages from women in all walks of life sending condolences because they’d lost babies, too.
I was full of questions. Is it normal to bleed for days after surgery? Did you feel like a bad mother after flushing blood clots, terrified that you were sending pieces of your baby down the toilet drain? Will I ever feel happy again? And how much was all of this going to cost?
One by one, they comforted me and told me that I’d be okay even though it felt like my world had ended. A friend told me to send my husband out to buy pads. Another recommended grief counseling. Yet another sent flowers. They welcomed me into a sisterhood that no woman wants to join.
There are downsides to sharing, of course. I received insensitive comments from well-meaning people who told me my miscarriage was part of God’s plan. One friend was told she was seeking attention after she posted on Facebook that she had experienced recurrent miscarriages — and even if she was, what’s wrong with seeking attention when you might really need it?
I don’t think that anyone should feel obligated to tell people their miscarriage story. It’s a horrifying trauma and everyone processes things differently. But if someone does decide to share their experience, people should listen and respond with grace. It takes a lot of courage.
It’s been four months since I lost my son. We named him Jedidiah David, names that both mean “dearly loved.” I’ve gone to therapy and talked to a psychiatrist about how I feel. I should be decorating a nursery and planning a baby shower, but instead I’m starting to think about trying for another baby.
Miscarriage steals the joy from future pregnancies. When I get a positive pregnancy test, maybe someday soon, I’ll know just how many things can go wrong. I’ll be cautiously optimistic, but the naive happiness I felt for Jedidiah is gone.
Even though life is back to normal, I feel like I’ve been punched in the gut whenever I meet someone who’s expecting a healthy baby, and I sometimes avoid social media so that I don’t see unexpected pregnancy announcements. When I see old friends or acquaintances, they sometimes admit that they aren’t sure what to say to me.
Still, sharing my miscarriage with the world is a choice I don’t regret. After all, there’s nothing to be ashamed of.
WHAT TO DO IF SOMEONE YOU LOVE MISCARRIES
Don’t try to find a silver lining. “At least you can get pregnant again” and “Well, it happened early” aren’t comforting statements — they’re unintentionally cruel. Instead, just listen.
Remind them that it’s not their fault. The majority of miscarriages are caused by chromosomal abnormalities, but that won’t stop a grieving person from wondering what they did wrong.
Ask them what they need. Your loved one may need a shoulder to cry on, or they may simply want to be distracted and not think about the loss. Talk to them to find the best way to help.
Send food and gift cards. I didn’t have to think about what I’d eat for lunch or dinner for weeks after my miscarriage — loved ones and strangers sent meals and food delivery gift cards after seeing my post on social media.
Understand they might need more help. Heidi McBain, a therapist who specializes in maternal mental health, said women may feel lonely after dealing with miscarriage. “I see a lot of clients in my practice who have had a miscarriage in the first trimester, and because they choose not to tell anyone about their pregnancy, they don’t then want to tell people about their pregnancy loss,” she said. “It can be very hard and very isolating.” McBain recommends that women who are struggling emotionally see a therapist, especially if they plan to try to conceive. “It’s important to be in a healthy place emotionally before you start trying to get pregnant again.”
Pregnancy and Infant Loss Awareness Month
October is Pregnancy and Infant Loss Awareness Month, and Oct. 15 marks World Pregnancy & Infant Loss Remembrance Day. In 1988, President Ronald Reagan declared October as “a month to recognize the unique grief of bereaved parents in an effort to demonstrate support to the many families who have suffered such a tragic loss,” according to the nonprofit Star Legacy Foundation.
Ayana Lage is a social media consultant, blogger and writer in Tampa. Contact her at firstname.lastname@example.org.