Last December, Lindsey and Ryan Brewer’s son, Grayson, was delivered at 21 weeks. Immediately, the couple had a photographer come to the hospital to take family photos.
One photo shows Lindsey in a hospital gown looking down at Grayson, a small bundle in her arms. Another shows Lindsey holding Grayson’s hand up to the camera; it is so small that it barely covers the tip of her index finger. The scene all seemed fairly standard — as far as family photos go — except that Grayson was stillborn, and this was the way the Brewers were going to remember their son.
The next morning, Lindsey sat down at her computer in her home office in Janesville, Wisconsin, and did something that is increasingly becoming a trend among women who have stillborn children or miscarry: She wrote a Facebook post announcing the death of her son, and then shared pictures from the hospital and her maternity shoot.
About one in four women who become pregnant will miscarry, and one in 160 will experience a stillbirth. Of those women, a growing number are dealing with the devastating pain and grief in new ways, particularly in their use of social media. Sharing their personal stories, it seems, helps these couples deal with their grief and begin the process of healing.
‘YOU’RE GOING TO LOSE YOUR BABY’
The couple was ecstatic when they found out Lindsey was pregnant a few months earlier in August. Lindsey, 25, and Ryan, 29, had been married for less than a year and had just started trying for a family.
At the 12-week checkup, they found out that they were having a boy but also got some troubling news: The baby was measuring small and had two cystic hygromas — buildups of fluid behind the head and neck that can be an early sign of Down syndrome. A test showed their baby had a 95 percent chance of having the chromosomal defect.
The Brewers opted to do another test to confirm the original findings. Either way, they were still excited to be parents. They had picked out an outfit to bring him home in and decided on a name: Grayson John Brewer.
At the 16-week mark, Lindsey went in for an amniocentesis, the test that would confirm if the baby had Down syndrome. But there was worse news.
After an initial scan, the doctor said that she could not perform the test. There was too much fluid buildup.
“It’s inevitable,” Lindsey remembers the doctor saying. “You are going to lose your baby.”
In an instant, the Brewers went from preparing to meet their son to preparing to lay him to rest. Together, they decided that Lindsey would continue with the pregnancy unless her health was compromised.
At 21 weeks, the Brewers went in for an ultrasound and found out that the baby’s heartbeat was gone. That was a Thursday. The next Monday, Dec. 11, Lindsey and Ryan went to the hospital where she was induced. Grayson was born soon after.
They called their friend, a photographer, to come and take photos of the family, and then Lindsey and Ryan took Grayson home to rock him in his nursery before taking him to the funeral home to prepare for burial.
The next day, Lindsey went to Facebook for support. As painful as it was, she was ready to share her loss and grief.
“I wanted the news out there,” Lindsey says. “And I needed people to talk to.”
A SOCIAL TREND
Sharing on social media helps families break through the isolation of miscarriage and stillbirth, according to Denise Cote-Arsenault, a registered nurse and professor at the University of North Carolina at Greensboro School of Nursing. For more than 30 years, Cote-Arsenault has worked with families who have lost babies.
She’s seen more families have pictures taken and displayed not only on social media but also in their homes. She says they also actively speak about their deceased children as part of the family, things that simply did not happen a few decades ago.
“I think it’s a very healthy, therapeutic thing for them to do,” Cote-Arsenault says. “It used to be if you lost your baby you were told not to talk about it.”
Posts about death in general have increased on Facebook since 2014, when it changed its policies around memorializing pages of the deceased. A study conducted last year on social media mourning found that 50 percent of Facebook users surveyed had either posted or interacted with a post about death in the last few years.
The number of online support groups has grown since 2014 as well. Families who have suffered pregnancy loss now have many spaces online to connect, grieve and bring awareness about the prevalence of miscarriages and stillbirths to a wider audience.
Currently, there are more than 100 active Facebook groups and Instagram pages devoted to grieving parents. There are also accounts dedicated to awareness, specifically on Instagram — a recent search shows that the hashtag #pregnancylossawareness has been used nearly 19,000 times on the platform, and #pregnancyloss has been used more than 100,000 times.
Dr. Jessica Zucker, a clinical psychologist in Los Angeles who works with women who’ve experienced pregnancy loss, runs an Instagram account herself, a page called I Had a Miscarriage.
“We’re seeing more people announcing their losses, because why shouldn’t they? If it’s become normal to share sonograms and gender reveals, acknowledging pregnancy loss is just as important,” says Zucker. “If people are sharing about family-building, shouldn’t there be space for people who intended to build their family to share their grief if it goes awry as well?”
Research has shown that using social media can be beneficial to the healing process. A 2016 study by Eastern Illinois University graduate student Resa Ware, a hospice bereavement counselor, found that many people who use Facebook to publicly express grief find it helpful; 46 percent of users surveyed said that Facebook had a positive impact on their individual grief journey.
After Lindsey posted her story on Facebook, several mothers in her community messaged to share their own stories of loss and offer support. She also joined a Facebook group for bereaved mothers.
“People can post and everyone is so supportive and behind them,” says Lindsey, adding that speaking to women who have had similar experiences helps her the most. “It’s amazing.”
At first, after they lost Grayson, the Brewers weren’t sure that they could handle another pregnancy. But friends and family encouraged them to keep trying. “Remember,” a friend told Lindsey, “you are parents even though you don’t have a baby at home.”
The couple have been trying to have another child since February, but are not pregnant yet. As much as Lindsey wants to get pregnant again, she’s also terrified. She’s not sure that she’ll ever enjoy pregnancy again. And as time passes, she’s found that people who have not lost a child sometimes don’t understand that she’s still grieving.
Still, she has continued to share photos from her shoot with Grayson on social media and says that she could not be happier with how the images turned out, or her decision to have them done.
And until the time comes when she’s able to share news of another pregnancy, there’s still Facebook.