Rose Serafini lived for 38 minutes. It was more than her parents expected, and far less than they ever wanted. But those 38 minutes were, for her mother Kristen Serafini, calm. “I just only felt peace. It was amazing, as that was not a feeling I really had during the pregnancy,” Serafini tells Romper. She credits her doula Randi van Wiltenburg, of Butterfly Baby Doula Services, with creating that peaceful feeling. As a certified loss doula, Wiltenburg spends much of her time with clients like Serafini, helping them get through what can be the most painful moments of a parent’s life.
Serafini contacted van Wiltenburg in January of 2017, after learning her baby had anencephaly, a disorder where the developing fetus is missing a major portion of the skull, brain, and scalp. The family met with van Wiltenburg a few times, and texted leading up to the birth. When Serafini was induced at 31 weeks, van Wiltenburg was there, reinforcing that no matter what happened with Rose, Serafini’s experience was real and valuable.
“Kids with anencephaly, their heads are typically disformed, because they’re lacking a brain and skull or it’s partially there. And Randi was so sweet to point out immediately, like, ‘Oh Kristen, she has your nose,’ and going through the details of things she saw the characteristics of my husband and I,” Serafini says. “It’s really nice for people to be able to see even in your dying child there are those characteristics of you in them, whether it’s facial, body, or even just temperament. I think that’s really helpful, because it kind of solidifies that this is your child, not just something passing through life that you’re going to forget about. No, this is your child, you’re not going to forget them.”
Van Wiltenburg also took photographs of Rose and the family, something she does for many clients. She might also help the parents bathe and dress the baby, or take clay imprints of their hands and feet. For van Wiltenburg, helping create those lasting memories is crucial.
“You literally have this amount of time to make the memories to last a lifetime,” she tells Romper. “If (parents) want to bathe their baby, I can help them with that, and using saline water can help if there’s any tissue coming away. It can help remove redness and plump up the tissue again. And just those little things. I have hats and blankets, and they can change clothes.”
You get to see people go through this experience and it’s heartbreaking, but sometimes there’s also healing and beauty within loss
Van Wiltenburg became a doula after dealing with her own pregnancy losses. After multiple miscarriages, she was frustrated by a lack of support around her home in Alberta. She trained to become a doula in 2016, and worked with Loss Doulas International for additional certifications.
Since then, she has worked with dozens of families, helping them through their pregnancies and losses. Some parents contact her after a loss, like a miscarriage. Others contact her after a fetal diagnosis, like Serafini. Nearly all of her clients come from word-of-mouth recommendations.
That so many people entrust her with such a vulnerable and painful experience in their lives is something she doesn’t take for granted. “You get to see people go through this experience and it’s heartbreaking, but sometimes there’s also healing and beauty within loss,” van Wiltenburg says. “It can be a really beautiful birthing experience... Being allowed to walk into such a sacred space, it’s really humbling.”
Loss doulas have a difficult job within the community. Not only are they helping with pregnancy and labour, and all the emotions that come with that, but the added heartache of losing the baby can be a lot to bear. It can be difficult to avoid getting too emotionally attached.
“I definitely have some moments where I cry, but I don’t want them to console me. That’s not their job,” van Wiltenburg says, who chronicles her work on Instagram under the handle butterflybabydoula. Instead, she takes time after each client to process what happened. “We all feel different things, and just allowing yourself to feel whatever you feel, and taking that step back, and realising that a big love can be a big loss.”
She also works to embody a common doula expression of “holding space” — providing support without judgement or direction. Often times, it can mean simply being present and listening to the clients.
That’s where Amy Wright Glen always starts. She’s been a doula for more than a decade, as well as a chaplain and certified yoga teacher in Florida. For Glen, she sees the work she does as “emotional triage.”
“It’s powerful work, because it’s complicated grief. It’s not the grief that comes at the end of a long life,” Glen tells Romper. “When it happens, especially because the child is so little, it can be so unsettling, and almost nightmarish, like did I dream that? Did that actually happen to me? That kind of experience is very hard for the body to make sense of.”
I don’t believe death is a disease we can cure, or that it’s a sign of failure when it occurs.
Glen works with the families, holding space and helping them mark the occasion with a ritual or event that is specific and meaningful for them. That can mean something like getting a tattoo of the baby’s heart-rate monitor, something she has seen become more popular recently with her clients.
It’s these rituals that Glen says help people grieve and craft meaning from the death, and it’s something she wishes more health care professionals were well-versed in.
“I don’t believe death is a disease we can cure, or that it’s a sign of failure when it occurs,” Glen says. “All of us die. The question is how can we die well?”
That’s a question that Marissa Peterson is also working to answer. A loss doula in Georgia, Peterson says this line of work was a calling. Now, she coaches families through their child’s death, helping to navigate the unknowns.
“When you lose an older child or an adult, you can look back on their life experiences. You may be able to know their favourite colour or what kind of music they liked,” she says. “When you lose an infant or a pregnancy, you’re losing hopes and dreams. You’ll have those what ifs forever. What would my baby have looked like? What would they have liked to play with?”
In this process, Peterson sees herself as a gauge for the families. While everyone processes grief differently, she says there are some physical and psychological markers that she looks out for. “Sometimes when you’re in a disaster, you don’t know you are.” she explains. “I encourage all my families to at least make contact with a therapist or counsellor, because you might be feeling fine now, but it might be different in a week and it could be harder to make that phone call.”
Counterintuitively, one of the markers of normal grief is a feeling of isolation. Peterson says it’s very common for grieving parents to resent others around them for continuing to live their normal lives, after they have suffered such a big loss. That’s where she works to “hold space” for the families, listening and creating a safe space for her clients.
It can also be an emotional job for her, and she says she is affected by each client she sees. “There’s no way to not be affected… I feel like a carry little pieces of these families with me.”
To help with that, Peterson leans on her faith and a strong circle of other loss doulas. She is part of Still Birth Day, a national organization of loss doulas which helps direct clients to providers in their area. She says having regular meetings with other doulas is one of the ways to process the emotional work that she does.
And for mothers like Serafini, the services provided by loss doulas are often crucially important, though not always talked about openly. Whether it’s a sense of shame, or a feeling of “jinxing” the pregnancy, Serafini says people don’t always acknowledge the possibility of anything other than a healthy pregnancy and birth, which can make finding a loss doula difficult.
“We as women, I think we haven’t really been talking about losses in this situation. So, it’s nice whether you’re embarrassed or whatever, to at least have one person. One really strong and able person who can guide you through the process and be someone you can lean on.”
CORRECTION: Randi van Wiltenburg's name was spelled incorrectly in a previous version of this article. It has been updated.