Kayla Marcinkus had her hands full with three kids when she got an unexpected, but happy surprise: a fourth was on the way. At about eight weeks along she felt ready to announce the news, and posted a photo on social media of her children piled into her toddler’s crib, holding up a sonogram picture with giddy smiles. “We planned for three but we didn’t see, God’s plan was four so we’re having one more!” she wrote. “We couldn’t be more excited for this baby!”
Plans for this new life were already swirling in Kayla, and her husband, Joe’s, minds. What would he or she bring to the world? How would the family change? They looked forward to one last time to savor all those “firsts.”
But a few weeks later, it all came crashing down. At a routine ultrasound, the baby’s heartbeat was undetectable. At 13 weeks, Kayla had miscarried.
“After that appointment I just sat in my car, frozen – unable to think and to feel. It like my entire world just crumbled,” she said. Why did this happen? How would she tell her children? How could she hold it together for her family?
Joe told the kids and Kayla gave herself a month to privately process the loss before sharing it with family friends. In a follow-up post on social media she wrote, “I’m finally sharing that someone I love was never born. My body feels empty, my heart is broken, and my soul misses you deeply. You will forever be my favorite ‘what if.’”
Every year, millions of expectant parents around the world face losing a baby while pregnant or just after birth.
Both miscarriage and stillbirth describe pregnancy loss, but they differ according to when the loss occurs. According to the Center for Disease Control and Prevention, a miscarriage is usually defined as loss of a baby before the 20th week of pregnancy, and a stillbirth is loss of a baby at 20 weeks of pregnancy and later.
Each year about 24,000 babies are stillborn in the United States. About 10 to 20 percent of known pregnancies end in miscarriage, but the actual number is likely higher because many miscarriages occur so early in pregnancy that a woman doesn't realize she's pregnant.
But as common as these losses are, we rarely talk about them. Maybe that’s because pregnancy and infant loss are just so hard to talk about.
“No one knows what to say,” said Kayla.
But Brenda Johnston, of Marlborough, co-chapter leader of the Massachusetts Chapter of the TEARS Foundation, does know what to say – or, at least, how to listen.
“I always tell people ‘I can’t give you a cliff note or a shortcut for how you’re going to get better. I’m just going to be there for you and help you get to know your new self,” she said.
In 2009, Brenda’s son, Liam Michael, was born sleeping when she was 19 weeks along. For years she lived with a silent, aching pain. She saw a counselor but after a certain amount of time, their sessions became nothing more than catching up and swapping recipes. Friends and family had been a great support, but eventually they moved on with their lives. Brenda felt alone, stuck under the weight of grief and guilt.
Several years after losing Liam, Brenda stumbled upon a volunteer opportunity with the TEARS Foundation, a non-profit that offers financial and emotional support to bereaved parents.
“Finally, it was a room full of women who knew exactly how I was feeling,” she said.
Chapter co-chair Emily Coelho felt the same relief when she found the TEARS Foundation after her own losses. She had an early miscarriage at six weeks, then later lost a daughter, Lena, in January 2016 at 23 weeks.
“It’s a very unique loss. You feel alone,” she said. “Right after I lost Lena I was doing frantic Google searches, trying to find other parents to connect with.”
The Massachusetts Chapter of the TEARS Foundation was formed four years ago, in September 2015. They help local families with funeral costs and hold free support groups for bereaved families who have experienced the death of their baby.
In June, the chapter opened a new Center for Child Loss at 300 West Main Street in Northborough. It’s only the fourth of its kind in the country, with most other chapters holding meetings and groups in coffee shops, restaurants or community centers. The center is run by volunteers and funded through donations and fundraisers, like last month’s Walk & Rock at Nashoba Regional High School, where about 20 teams walked and 25 babies were honored.
The center is calm and inviting, providing a permanent location for the local chapter’s volunteer meetings, support groups, resources and a lending library. It’s open three days a week for drop-ins, and hosts scheduled self-care days throughout the month for those who need a little space or alone time.
A support group for bereaved families meets the first Monday of every month from 7 to 9 p.m. There are also dedicated open hours Tuesday through Thursday from 11 a.m. to 3 p.m., or by appointment after hours. Families can come in and talk with the volunteer staff, find resources, or use the site as a meeting location for their own support staff like therapists.
“We have a lot of dreams and plans for this space,” said Brenda. Down the road, she hopes to start additional support groups for grandparents or for women who are navigating pregnancy after loss. “I want to help people not feel the way I did for so long.”
Kayla has found support in a private Facebook group, describing the other members as “warriors.”
“Sometimes my loss feels insignificant compared to some but in reality a loss is a loss,” she said.
Brenda agreed, “a loss is a loss, no matter how small.”
For Robyn Bear, the woman behind National Pregnancy and Infant Loss Remembrance Day, there needed to be an avenue to recognize these losses -- however big or small. According to her website, she campaigned to make Oct. 15 a national day of remembrance “after having had five miscarriages with little to no support.” She wanted a day for people to grieve visibly, get the support they needed, and unite around the world by lighting candles. On Tuesday, October 15, at 7 p.m. in every time zone around the world, families will light a candle in honor of all lost babies.
In 1988, President Ronald Reagan proclaimed October as Pregnancy and Infant Loss Awareness Month. According to the non-profit group Share, this month “allows us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems. Sadly, these are deeply painful experiences that many families face daily, but they receive little attention. It may be hard to talk about, but the more open we are, the better we can serve bereaved parents.”