Rebecca comes striding towards me in the busy coffee shop where we’ve arranged to meet. I’ve only ever spoken to her via email but I’ve seen the photograph on her life coaching website so I recognize her instantly. Rebecca is a life coach and mother who has experienced a devastating loss, but she has welcoming eyes, a warm smile, and the most lustrous, curly head of hair I’ve ever seen.
I’ve requested a meeting with Rebecca because I’m interested in her experience with motherhood, more specifically, I want to talk about the death of her son.
“I felt invisible,” she explains, as we get to the crux of the matter with surprising efficiency. I find it impossibly difficult to imagine a scenario where this captivating woman, who was clearly born to take up space, would feel ignored. Rebecca tells me the most painful case of being publicly shunned was when she returned to her usual mother and baby group quite clearly bereft, to find that no one dared mention her dead son. “No one came up to us to tell us they cared, despite us attending with one child less.”
No one wants to be the one to steer idle conversation towards death, but the truth is that infant mortality rates in America are higher than in other developed countries. However, being open to the subject matter is about more than just acknowledging the loss of a child. It’s about acknowledging the loss of identity. The feeling of being stripped of motherhood.
Against the natural order
There is no word to define a mother who has lost her child, and although this shouldn’t halt the dialogue it is a subtle reminder that these conversations aren’t happening as often as they should. Bear in mind that a woman who has lost her husband can call herself a widow and a child without parents is tagged an orphan. Yet the bereft mother has nothing to neatly define her traumatic experience of baby-loss. Of course, each experience is worthy of its own personal narrative, but having a catch-all label is said to be helpful according to the people who are encouraging these discussions.
One such person is Nicole Bowles. She is a bereaved parent and founder of Our Missing Piece, an organization dedicated to supporting parents whose children have died. Nicole is campaigning for the word ‘vilomah’ to be integrated into everyday language, a word which is Sanskrit for ‘against the natural order’.
“It’s a tool that people can latch onto and a terminology that creates a place in society for bereaved parents,” Nicole explains. “No matter what, unfortunately, children die and it’s a world that we don’t want to talk about. But if we give it a name and a place in the world then it slowly but surely becomes more accepted.”
In the same way that cancer and AIDS were once considered too taboo for polite conversation, infant mortality too needs a rebrand. It needs to be packaged up in a way that makes sense in order to become normalized. This is particularly important for mothers who lose their one and only child, because there is often no visual proof to the outside world that they ever were or continue to be a parent.
Ineligible for support
Take Cassie, for instance, a 26-year-old mother from Birmingham, U.K., who lost her baby Norah when she was two weeks old. I’m taken aback as Cassie approaches the subject of baby-loss and her complicated role as a mother with a sense of enthusiasm. Although she doesn’t personally identify with the word ‘vilomah’ (something which I’ve since learned is common for those directly affected by child mortality) she agrees that it is useful in a wider context when it comes to providing support to baby-free mothers.
Shockingly, Cassie was denied support and deemed ineligible for perinatal mental health care after Norah’s death. “We had been promised that I would receive perinatal care for a full year after giving birth,” she tells me. “I was still postnatal, I still had postnatal health needs but that service didn’t consider us eligible because our daughter was dead. That’s a really common experience.”
Cassie had gone through a full term pregnancy, had a cesarean section, cared for Norah for two weeks before she died and yet still she wasn’t privy to the support that new mothers with living children are given as standard. She was still producing milk, still bleeding, and still taking antibiotics for her wound. Yet she was left to manage much of the psychological aftermath alone. Cassie describes herself at the time as “still being ravaged by everything” yet still she was dismissed by the system in her search for maternal support.
Celebrating as parents
We speak for over an hour and one thing is clear, Norah is being kept alive through Cassie’s voice. She and her husband talk about their dead child not only because they want to but because it’s the right thing to do. They feel that Norah didn’t get the chance to live a full life and now they must live it for her. On her birthday they buy her books and read them aloud at the spot where she is buried. Cassie tells me that on a recent visit to the zoo they talked openly about what Norah’s favorite animal might have been. Although these discussions bring both parents joy, she admits that they are reserved for specific family members who are comfortable talking about the subject.
It makes me smile to know that Cassie received a Mother’s Day card from her husband this year and returned the favor to him a month later, but what’s painful is the cold reality that it’s up to them to keep these traditions going year after year.
The fellow parents with whom they bonded during antinatal classes have stopped calling, and they are stuck in limbo as parents with only two weeks of hands-on experience. It was those final days that Cassie refers to now as ‘strangely affirming’ in relation to her parenthood. “We had a week in intensive care and we made the decision to switch to palliative care and let her die,” she says. “That in itself was the best decision we could make as her parents.”
Where is the support?
I find it startling that the system which gave Cassie full control over Norah’s death doesn’t have the measures in place to guide her through this next stage of parenthood. In a world where mothers give their bodies over to new life, it seems only fair that society should repay them with the help and respect they deserve, even when that life is no more.
I revisit an email from Rebecca in search for some of her infinite wisdom, something that we can do to help give mothers without babies the recognition they deserve, and I uncover one story that is worth sharing.
“One time, when we were away on holiday and it was Charlie’s birthday, some friends who had never met Charlie sent us a photo of them standing around his grave singing Happy Birthday at the top of their voices. They left a toy car and must have looked hilarious in the little cemetery, but Charlie would have loved it. It meant so much for us to know we did not have to remind people about this special day and that he is now part of their lives too.”