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Challenge: Pregnancy and Infant Loss

Miscarriage and Baby Loss Books: The Fight for Visibility and Cohesion in Publishing

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Just over two years ago, I was in my kitchen shooting the story behind I Love You Still: A Memorial Baby Book for a local NBC affiliate. Back then, few had heard of a baby memory book created specifically for mothers who’ve experienced a miscarriage, stillbirth, or newborn loss.

Our story quickly went viral. It spanned numerous national networks and social media platforms, including NBC News and TODAY Parents. The book even reached #2 on the Amazon Best Seller list for baby journals, selling out before it could reach #1. Almost immediately, I Love You Still was picked up by Barnes & Noble, Target, and Wal-Mart. My dream for every bereaved mother to have a baby memory book centered around the time she spent with their baby—however brief—was becoming a reality.

It was a momentous occasion, to be sure. Yet, the public outpouring surrounding our title highlighted an industry void that’s been overlooked for far too long. Despite our book’s popular success—and a clear and present need for more books like it—it was passed on by dozens of agencies and publishers due to its inability to ‘fit within an existing genre.’

For many months, I—like many first-time authors before me—accepted this industry feedback as fact. However, the consistent sales of I Love You Still and public requests for foreign translation indicated there must be more to this story.

In September 2021, I resolved to find exactly where the well-established line of representation for pregnancy in books, periodicals, and multimedia delineated from those representing perinatal loss. In doing so, I discovered a complete lack of categorization for materials pertaining to miscarriage, stillbirth, and neonatal loss in the publishing world’s master list.

The system through which all books are categorized is called the Book Industry Standards and Communications codes list—the BISAC codes list. The list is created and modified by the Book Industry Study Group (BISG), out of New York, New York. Simply put, the BISAC codes list is the DNA of the literary industry, and it’s utilized at every stop of the supply chain.

As a core element of book product metadata, BISAC codes enable systems to recognize and merchandise print and digital books in catalogs, websites, retail stores, and libraries. It’s used to organize online search results, create barcodes, determine store layouts, create sales metrics, and more. It’s quite simply used for everything. However, most authors never learn much about the BISAC list because their agent or publishing house chooses the best code(s) on their behalf.

Since this wasn’t true for me, I stumbled on something unexpected:

In 2021, there is still no categorization for books about miscarriage. No BISAC code.

There is also no BISAC code for stillbirth.

No code for neonatal loss.

No code for SIDS.

No code for the NICU experience.

In fact, there is simply no BISAC code devoted to unexpected pregnancy and baby loss of any kind.

That means there is no central spot wherein these resources are compiled. It means that those looking to provide such resources are turned away at a much higher rate. It means there is no way to be on a Best Seller List pertaining directly to this topic, because the list can’t exist without the corresponding BISAC code.

This lack of representation affects everything from how the perinatal loss sections are organized (or absent) from bookstores, to fragmented online search results. Existing books involving miscarriage and other perinatal loss are scattered across a handful of genres that are vaguely appropriate, at best. In short, this ‘missing genre’ perpetuates the gag order under the stigma of perinatal bereavement.

Today, all industry representatives looking to categorize a book on miscarriage would use a code devoted to Death, Grief, and Bereavement (FAM014000), or under the Health & Fitness category's code for general Pregnancy and Childbirth (HEA041000). In fact, our own baby memory book is quite often found under “Self Help.” This is a direct result of the lack of proper categorization.

Conversely, though, there is a code for Aquatic Exercise (HEA007010). There is also a code for for Fantasy Sports (GAM016000), and Bitcoin & Cryptocurrencies (BUS114000). Thankfully, there’s also a code for Felt Crafting (CRA060000). In 2020, the BISG committee added 155 codes to the list, but somehow the plight of the 1 in 4 women who will miscarry was not among them.

A lack of audience isn’t to blame: pregnancy loss affects 1 in 4 women, or an estimated 23 million women each year. Miscarriage is also heartbreakingly universal—touching women of all cultures, ethnicities, religions, and walks of life. Its categorical inclusion in BISAC coding is entirely apolitical, and its continued omission both woefully undermines the gravity of this shared experience and stifles the progress of those who seek to improve it.

There is hope, however. In mid-October 2021, my brief email inquiry to BISG was taken up by Executive Director (and administrator of the BISAC codes list) Brian O’Leary. Brian and I discussed this lack of representation via email; he explained that voting for changes to the BISAC codes list occurs in October (coincidentally, also Pregnancy and Infant Loss Awareness Month). In December, BISG announces the changes to the next year’s codes. Mr. O’Leary even shared a personal connection to my mission, and volunteered to forward my request to the Board Chair. In last year’s announcement of the 2020 list updates, Brian O’Leary wrote:

‘The BISAC Subject Codes are all about categorizing books to promote discovery and purchase. The annual updates are a reflection of society, not a driver of it.’ In recognition of the committee and its chairperson, he added, ‘Connie and the Subject Codes Committee are the unsung heroes behind this enormous effort. While some of this work is straightforward, much of it requires a great depth of insight and sensitivity. And though most consumers will never know what drives where books are shelved or which titles are returned in online searches, BISACs are essential to our business.’

New fields are added to the BISAC list’s annual amendment consideration every month. The addition of a subcategory for Perinatal Bereavement or Perinatal Loss to the BISAC codes list would allow all authors on the subject more depth in their field, and greater opportunity for representation. This, in turn, would make perinatal loss books easier to find by bereaved mothers who need them.

We can expedite the addition of Perinatal Bereavement to the DNA of publishing world through public discussion, and by petitioning the Committee directly. For a suggestion to be given consideration, you can visit the BISG website to complete their quick survey. Be ready to provide three examples of existing books related to miscarriage, ectopic pregnancy, stillbirth, terminal fetal diagnoses, SIDS, NICU, or other neonatal loss—all of which are unrepresented.

The driving force behind the next big milestone for the 1 in 4 is our insistence that this shared experience is both worthy of discussion and deserving of proper recognition through the addition of a Perinatal Bereavement category.

This article was published in the TODAY Parenting Team community website. A video of this subject matter has been posted to @iloveyoustillbook on TikTok to raise awareness of the need for a baby loss, or Perinatal Bereavement category in publishing. That video garnered nearly 100,000 views and 25,000 likes within 5 days.


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