In the moments right after her daughter’s birth, Elizabeth Soika was afraid to open her eyes. What would this little girl, this “tiny fighter,” this perfectly imperfect person that she had waited more than 37 weeks to meet look like?
“I was scared to open my eyes after Clara was placed on my chest, so my husband described her to me before I looked,” Soika remembers. When she opened her eyes, she saw that her daughter, while no longer alive, “was absolutely beautiful, and in spite of her chromosomal abnormality, she looked so much like our son. I tried to memorise every aspect of her from her perfect nose to her clenched fingers and perfectly imperfect ears.”
Soika savoured the moments she had with Clara on that April day in 2017, dressing her in a gown made from a donated wedding dress, taking pictures of her, holding her, and having her blessed by an Army chaplain. “She was held and loved by everyone. We captured her fingerprints and footprints. We took a lock of her hair. We made a lifetime of memories in one morning,” Soika, 42, tells Refinery29.
Soika had known since her 20-week ultrasound that the little girl her son had nicknamed “baby sister” had Trisomy 18, and that the heart deformities it caused were so severe that they would be inoperable. Soika had been told “she would not likely survive until birth.”
“Needless to say, we were devastated,” she says. But Soika and her husband ruled out the idea of terminating the pregnancy, something she felt “was not an option for a child we loved so completely.”
“After Clara's diagnosis, I vividly remember praying God would take our daughter sooner rather than later because of the dread I felt about having to watch my baby die,” Soika says. “I remember wearing clothes to hide my pregnancy so I wouldn't have to talk with well-meaning strangers about the fate of my child, or worse, pretend everything was perfect.”
Then Soika met Donna Ore, 30, a bereavement doula. Doulas generally help women through pregnancy, childbirth, and the first weeks of motherhood; challenging times even for those who deliver healthy infants. But bereavement doulas are specially trained to support women in perhaps the most difficult moments of their lives: miscarriages and stillbirths.
“Donna was a huge factor in helping me embrace pregnancy,” Soika says. “Her support was instrumental in the darkest days, and she reminded me to take care of myself during a time when I just wanted to disappear."
In the UK, sadly the death of a baby is not a rare event: around 15 babies die before, during or soon after birth every day. According to Sands, in 2017 in the UK one in every 238 births was a stillbirth and one in every 363 babies died within the first 4 weeks of life.
About one percent of pregnancies in the U.S. will end in stillbirth (defined as a loss after 20 weeks gestation), according to the Centres for Disease Control and Prevention, and every year about 24,000 babies die within their first year of life. Loss in early pregnancy (before 20 weeks gestation) is even more common, occurring in about 10% of clinically recognised pregnancies, according to the American College of Obstetricians and Gynecologists. And yet, the silence around miscarriage, stillbirth and infant loss is profound.
Parental bereavement is an invisible epidemic... If you haven’t personally experienced pregnancy and infant loss, you know several people in your life who have.
“Parental bereavement is an invisible epidemic,” Heidi Faith, the founder of Stillbirthday, an organisation dedicated to supporting families through stillbirth, miscarriage and infant loss, tells Refinery29. “If you haven’t personally experienced pregnancy and infant loss, you know several people in your life who have... But in even the deepest chasm of grief, there is hope. There is beauty. There is goodness.”
And the people who have trained and dedicated themselves to helping women find that hope, beauty, and goodness might just have one of the most difficult jobs in the world. Like Ore and Faith, they support women through the birth and death of a child, sometimes all at once. They also help break the silence around stillbirth and miscarriage in our culture, says Kate Kripke, a psychotherapist and the founder of Postpartum Wellness Centre in Boulder, Colorado, who works with families who’ve experienced loss.
“It’s scary thinking about babies dying, whether in pregnancy or shortly after childbirth,” Kripke tells Refinery29. “So I think having a doula, someone who is really trained to be able to sit with that kind of grief and who has the ability to help that family integrate what that loss means in a way that is non-judgmental, expansive, inclusive, and connecting is infinitely important in that family’s ongoing mental health after loss.”
She reminded me to take care of myself during a time when I just wanted to disappear.
Ore originally studied to be a social worker, but began working as a postpartum doula in northern New Jersey in 2014 following the birth of her first child. She was exploring the options for bereavement doula training when she lost her own daughter at 13 weeks gestation in 2016. “It just pushed me to do it more,” Ore tells Refinery29. “It pushed me to be like, I need to dive into this and focus on this.”
Faith also became a bereavement doula after losing her child. She had been working as a doula for about 10 years when she “experienced birth in the first trimester, and felt absolutely ill-qualified, as a doula and as a mother, to know what to do. It was only through that experience, the death and birth of my child, that led to Stillbirthday.”
Since 2011, Stillbirthday has trained bereavement doulas, including Ore, in every state in the U.S. and more than 30 countries around the world. The program lasts between eight and 12 weeks and covers everything from fertility to the physiology of birth to postpartum support and grief. Faith said that first and foremost, bereavement doulas are there to shatter the misconception that miscarriage and stillbirth are just something to get over.
“Birth and bereavement doulas are important during stillbirth and miscarriage because stillbirth and miscarriage are birth,” Faith says. “That alone is [an] intrinsically validating truth. And while not every mother [in these situations] may align with the premise that her experience is birth, she knows that her doula is skilled and capable to start from that place of the spectrum of interpretation and move to meet the mom where she is.”
Being in the delivery room to help coach a woman through labor is a big part of what bereavement doulas do, says Ore, who has assisted in 43 live births, about 60 miscarriages, and approximately 20 stillbirths.
“In birth in general, if you have any fear, it stalls the labor. And now you have fear and grief,” Ore says. “You’ve got to talk her through that and help mom push because she doesn’t want to push, she doesn’t want to see the reality of what’s happening.”
When Ore met Soika, she helped her make a birth plan, working through the fear and uncertainty she felt about delivering Clara. She gave her homemade herbal tea and essential oils, and encouraged her to have Reiki sessions to help release stress, Soika says. She also helped her plan Clara’s birthday, connecting the family with Now I Lay Me Down To Sleep, a nonprofit that sends volunteer photographers to capture families’ memories in the hospital.
“She had the foresight to know that making memories was so very important because memories would be all we’d have of ‘baby sister,’” Soika says of Ore. “She laughed and cried with my family. She listened and planned with my family. She was one of the miracles we witnessed during this trying time.”
On April 14, 2017, Soika and her husband learned Clara had died in utero. Soika gave birth to her five days later. Ore was there to support her.
“She was born the following Wednesday morning, and as crazy as it sounds, this was one of the best days of my life. She did not suffer or struggle. She spent a magical morning with mom, dad, big brother — who was three at the time — grandma and friends,” Soika says. “My two babies were together on Earth for one special day... I would not change one minute of this experience.”
Ore says it’s common for mothers to be nervous about looking at their babies for the first time, which is why the role of the doula is to try to help the family look past the child passing. “You help them look past that by saying things like, ‘He has the most beautiful puckered lips. Look at that nose, whose nose does she have? Look at those cute tiny, ears, whose ears does he have?’” Ore explains.
Some hospitals are even equipped with special cooling bassinets that allow families to be with their stillborn babies longer. But when it’s time to say goodbye, a bereavement doula helps the family through that process too, arranging a ride home from the hospital, sorting out childcare for older siblings, meals for the family, and, if desired, funeral services for the baby.
“It’s a joy to find special moments of hope, of dignity, of validation, in a space that otherwise can seem every kind of impossibly bleak,” Faith says of helping women through that journey.
Christina Jacobs, 39, had never heard of a doula when she became pregnant with her daughter, Brianna. Jacobs had always wanted to be a mother but had lost two previous pregnancies. So when she successfully became pregnant with Brianna in 2017, she was overjoyed.
“I just wanted to be a mum,” Jacobs tells Refinery29. “I was so happy.” Her mom had planned a surprise baby shower for her in January 2018, but a week before, she felt something was wrong.
The couple rushed to their local hospital in northern New Jersey. Although she had felt the little girl kick and respond to her touch, Brianna’s heart had stopped beating at 26 weeks gestation. Looking at the ultrasound, Jacobs said she struggled to come to terms with what had happened.
“In my mind, I was still in the place of no. I said, ‘She's right there. She's right there. She’s not gone,’” she remembers. “I felt really heartbroken, because you could see her in the ultrasound, and she was just lifeless, and I felt responsible. And I knew that was going to be our first and last meeting.”
On January 31, 2018, Jacobs delivered Brianna. Her mom was in the delivery room, and her husband cut the cord. The nurses took Brianna away to clean and dress her, but Jacobs felt nervous when they told her they were ready to bring her back in.
“The nurse opened the door and brought out Brianna in this beautiful white basket. They had dressed her up in a beautiful gown,” Jacobs remembers. They offered to take photos, but at first, she was afraid of what she might look like.
“She was so beautiful, she was so, so beautiful and the nurse took her out of the basket and then gave her to me,” Jacobs says. “She was so beautiful, just like an angel. And it was so, so painful. They let my husband hold her too, and we took some pictures, and then my mom got to hold her too, and that was important. It was her first grandchild.”
But when it was time to say goodbye, Jacobs struggled. She said she met with two social workers before leaving the hospital, but remembers “they sat as far away from me as they could, like I had a disease, like I was contagious.” A third social worker was more helpful, Jacobs says. Over the course of an hour, that third social worker also asked Jacobs if she was thinking about harming herself. “Because I said I wanted to be with my daughter, that was a red flag for her, so she asked me if I was suicidal, and I said I don’t think so, but I didn’t really know at that point.”
As she left the hospital with her baby daughter’s gown and the little mould of her feet tucked into her bag, Jacobs glanced at a new mom in the wheelchair next to her. Anger washed over her, irrational, and forceful, and real because that woman was going home with her baby, and Jacobs wasn’t.
The couple held a funeral service for Brianna, and brought her ashes home. Then, just a few weeks later, Jacobs said her fertility doctor told her she was ready to try again. She had one of the couple’s frozen embryos implanted and successfully became pregnant with another daughter, whom she named Hope. A friend introduced her to Ore and she was excited to have her support through this pregnancy. She also felt she could talk to Ore about losing Brianna in a way she hadn’t been able to with anyone else at the time of her birth.
“I have my husband, my family, his family, my friends, but it’s different, I wish that I had somebody there to talk to about my feelings,” Jacobs said. “I didn’t know who to turn to.”
By August, she was 21 weeks pregnant. Jacobs said she had a routine appointment with her OB-GYN, and then the couple went out to dinner. When they got home, Jacobs said she felt pain in her groin. They decided to play it safe and go straight to the hospital, where a nurse checked her cervix and told her she was four centimetres dilated and about to give birth to Hope. Jacobs recalls saying, “No, she’s too early. That’s too early. And they said, ‘There’s nothing we can do.’”
Jacobs was in labour with Hope for 14 hours before giving birth to her on August 2, 2018. She was exhausted and heartbroken, she said, and confused at why she had come so early. When the nurses handed her Hope wrapped in a blanket, “I didn’t know how to feel,” she says. “I had been up all night, I was in pain, and then when I got to hold her, I was upset because I felt like nobody helped her.”
But this time, she wasn’t alone in her grief. Ore came to the hospital and spent hours talking with her. She also helped her find two pregnancy and infant loss support groups, which Jacobs still attends. Jacobs felt Ore was real about her support.
“She’s been through the loss, too, so she understands everything I am thinking, everything that I’m feeling and that it’s all natural and that it’s going to be hard,” Jacobs says. “It’s not going to be an easy journey, it’s not going to be rainbows next week or next month, this is a forever heartbreak.”
Having a doula present in that moment to help women through the complex transition between motherhood and bereavement is powerful, Kripke says.
“A mother is a mother, even if that baby does not come home alive,” Kripke explains. “In stillbirth and miscarriage, there’s no live baby to show for that mother’s identity as a mother. So when you have a birth doula whose job it is to bring a baby from the inside to the outside and essentially help that woman integrate into her moments of meeting her baby and being a mother, that’s a profoundly important transition.”
Ore says she wishes more hospitals would refer women to bereavement doulas as soon as they find out that their baby likely won’t be born alive so that they can count on a doula’s support throughout the process. The doula can be there to hold their hand, witness their grief, validate their feelings, and be an extra set of ears as medical personnel explain what will happen next.
“We’re also there to listen to everything that's going on with the doctors, because when parents are having this moment of shock, they're not listening very well. They're listening, but they're not processing and comprehending,” Ore explains.
Ore says she has also helped the hospital staff, midwives, doctors, and nurses cope with their grief in the delivery room. “It shakes anybody up. So we provide a lot of support for them too, if they have to step out of the room, I’ll go with them and just let them cry and get it out, and then be like, ‘Ok, now take a deep breath, gather yourself and let’s do this together.’”
She’s also learned to take care of herself. “It took me four years to figure it out, because I'm very good at compartmentalising. But by the fourth year, it finally just came and took a toll on me,” Ore says. She now relies on a plant-based diet, craniosacral therapy, visits to the chiropractor, grounding therapy, and meditation to process and deal with the trauma of her job.
“I meditate on my way to a birth when I know that I’m going to a stillbirth or a miscarriage,” Ore said. “I kind of just centre myself and get myself in that moment. And I make sure to meditate after I’m leaving to just decompress, and then of course, I’ll bawl. I have two girlfriends that I talk to that understand this job, and they’ve been a lifesaver. When I get home, it’s snuggling my babies a little bit more.”
Soika shares that Ore still reaches out to her around Clara’s birthday. “Although we don't talk often, I know she is always there,” she says. “She was one of a handful of people who met our baby, and I’m so honoured she was a key player in the story.”
Jacobs says having a bereavement doula has helped her cope with the “everyday unknown of what this feels like,” and introduced her to her “warrior sisters” who have been through the same experience.
“It’s okay to feel all these different feelings,” Jacobs adds. “There’s nothing wrong with talking about your babies who have passed on. And it changes you, it changes you. I changed.”
Ore says that for friends or family members struggling to help someone who has experienced stillbirth or miscarriage, listening is the most important form of support. “Tell them, ‘I'm sorry.’ Tell them, ‘I'm here for you.’ Remember the baby's name and acknowledge the baby's name and say the baby’s name. Acknowledge anniversaries.”
Stillbirth and miscarriage are incredibly difficult experiences, but silence makes them worse.
“I want people to know that in spite of the overwhelming emptiness, sadness, and devastation you feel when learning your child has passed, it was the greatest honour of my life to carry that baby girl and make memories with her on her still birthday,” Soika said. “Dressing her, washing her, and taking pictures allowed me to ‘mother’ her and memorialise the day forever. The events of that day made every second of suffering before and after her birth worthwhile. She existed. She mattered. I am so blessed to be her mother.”