An Intimate journey that navigates today's most pressing women's issues.
When the Baby Is NOT OK:
Hopes and
Genes
by Jennifer
J. Brown
Genre:
Nonfiction Memoir
Out of nearly four million who get newborn screening each year, about 12,000 babies are diagnosed with a "rare disease" in the US alone. Jennifer J. Brown's daughters were two of them. It was in their genes.
As a student who thought about being a scientist first, and becoming a mother second, the news changed her life forever. This intimate memoir of pregnancy, childbirth and raising special kids revises the story of what to expect with hope. By turns heartbreaking and horrifying, educational and inspiring, here is a raw and remarkable journey of triumph and acceptance.
"Brown regales readers with raw vulnerability, sharing her heartbreaks, setbacks, and triumphs as she navigates unknown waters with two young ones in tow....Inspirational story that marries motherhood and science." - Booklife by Publisher's Weekly review.
Fun Facts and Little
Secrets: About the Author
From my early childhood days up until now, I’ve relished
being a storyteller and had a deep love of animals and the natural world. In
the rural area at the foothills of New York’s Catskill Mountains where I grew
up, I was outside a lot on my own or with my sister. Mother Nature provided
most of our “toys”. We made up stories together and enacted them privately all
the time. My mom was super-busy working and caring for the family, and so I
attempted to get her attention by being entertaining at home, or when that
failed, horrifying. She was quite emotional and I usually got some kind of
response, which was all I really wanted.
I guess when you’re a kid, they call spinning tales “telling
lies” but in adult life, it’s “writing fiction”. I quickly learned truth was
stranger than fiction, and began to love nonfiction as well. As I matured, I
also tried to be inspiring through my writing. To find the ray of hope after a
storm; to discover the silver lining in any disaster.
I had an early start with writing. By sixth grade I was
making up short stories. My teacher that year read one of these aloud to our
class, but stopped quite suddenly only halfway through. He said it obviously
couldn’t have been written by a child, and discarded it. John Steinbeck was my
favorite author at that time, so I’d picked up a style that was a bit dark.
This setback stopped me for a while, but by 10th grade I had a whole folder of
new stories and also some essays and poems. I submitted these at school without
keeping copies, and a few weeks later my English teacher told me he’d lost them
all. So that was a second delay. I didn’t get going again until I was about 25,
a few years after graduating college with a science degree.
The strangest thing that ever happened to me was later that
year. I’d been writing poetry nights, and at an in-person workshop I took in
West Philadelphia taught by renowned poet and South African activist, Dennis
Brutus, author James Baldwin walked in halfway through the class as a guest.
The small, older man was attractive, sensitive and soft spoken with great
warmth. After he’d shaken hands with each of us and left, I asked, “Who’s James
Baldwin?” That I didn’t know of the iconic writer’s novels and essays or about
his huge influence on other US authors horrified my classmates. I soon read all
Baldwin’s novels and essays, which deeply affected me. And then I was hooked on
the idea of transforming stories into activism. Much of my writing addresses
social issues of our time in one way or another.
A little-known, odd fact about me is that I prefer fruits
and vegetables over all kinds of other foods simply because the sight of meat
disturbs me. This began in childhood after seeing beloved chickens disappear
from the backyard and appear as a dish at the table the following day. I love
all kinds of animals, and currently have two sweet rabbits at home adopted from
a local New York City animal shelter. A close friend once asked me what animal
I would choose as my likeness, hinting slyly that this could reveal more of my
inner life to him. When I replied “fox,” then added “or maybe lion,” he was
shocked, but he erupted in hysterical laughter shortly afterwards. He’d
expected me to say some kind of gentle bird that ate only plants, he explained.
And I get it. At the time, I kept a cage-free pet cockatiel and a fruit-eating
lorikeet as companions at home. But who and what we care for, aren’t
necessarily the same things as who we are.
When the
Baby Is Not OK: Hopes & Genes by Jennifer J.
Brown, 2025
I’ve
blocked out a lot regarding the hospital’s phone call that pivotal day. The
brain’s neural pathways are blessedly wired to forget certain things. A version
of the words does come back to me but not the sounds or pictures that make up
my other memories. I can’t hear the caller’s voice in my head. Not whether they
were young or old, a woman or man, kind or cruel. It went something like this.
“There’s a problem with the baby’s first blood test results from newborn
screening. The baby is not OK. You’ve got to come back to the hospital. Right
away. Your baby tested positive for a
rare disease. It’s a genetic disorder, phenylketonuria. PKU.”
Hmm, I thought, really? What are the odds?
Abstract thinking can avoid facing difficult feelings. It’s one of the
psyche’s common defense mechanisms. Somewhat effective protection from mental
pain. I’m a numbers person and so those immediately raced helpfully through my
mind.
Here
they are. The odds are less than 1 in 10,000 that a newborn baby will have PKU
in the US. True, as the caller said to me, it’s rare. And for me, personally?
At the time I was studying to become a geneticist – a scientist who works with
DNA, genes and those diseases that run in families. Only 1 person in 10,000 is
a geneticist in the US. So that’s about as rare as a baby having PKU – but
completely unrelated.
The
odds of two independent things happening at the same time are small. Far
smaller than either one of them happening alone. They’re the odds of one
multiplied by the odds of the other. Even in my blurred postpartum state of the
baby blues I knew that came to only 1 in every 100 million births. So this
event of a geneticist having a baby who has PKU might happen to maybe 3 people
of the nearly 300 million in the entire US population.
That
certainly put things in perspective.
Is it
even possible?
Yes. But so very, very unlikely.
Every thought I’d ever had in my entire life that related in any way to
PKU flashed before my eyes. Like what some people say happens before the moment
of death. I felt that threatened. I
couldn’t think about the promise of modern medical care for people who had PKU
because I didn’t know a thing about it. Nothing about the present realities for
children or adults who were actually living with PKU. Nothing about the
optimism that might inspire. Nothing about the hope.
I
vividly saw what I’d heard, learned and read. During my science classes I’d
heard that babies were sometimes born with atypical health conditions labeled
“rare diseases.” Having PKU was genetic; it ran in families. Having genes for
PKU prevented breakdown of the amino acid phenylalanine. Babies were born
healthy but quickly developed a lifelong health condition with effects that
were labelled, at the time, as “mental retardation.” Today the stigmatizing and
hurtful term is less often used. Instead, clinicians refer to learning delays
or intellectual disability. But when the hospital staff said “PKU” to me on the
phone, that’s how I’d been taught. And so that’s what I thought.
During genetics and psychology courses I’d learned that having PKU could
mean childhood disabilities. That the condition led to developmental delays,
mental illness, seizures and more. That when a girl born with PKU grew up and
tried to have children of her own she was more likely to lose the baby from
miscarriage. Or to have a newborn with a very small head (microcephaly) who was
also at higher risk for heart defects at birth.
From
my own reading I knew that in too many families, no one had recognized PKU for
what it really was. That sometimes a child lived out their life confined to an
institution, painfully separated from their loved ones.
I’d
read about renowned author Pearl Buck’s daughter’s condition which went
undetected and led to lifelong disability. The first woman to win the Pulitzer,
Pearl Buck also received a Nobel Prize in Literature for her popular novels.
Her historical fiction book The Good
Earth about a Chinese farming family’s life story had been a bestseller in
1932. It was later made into an award-winning movie, and regained popularity
once again after being chosen for Oprah’s Book Club in 2004. The classic
story’s protagonist, a farmer, refers to his oldest daughter unkindly as “the
poor fool” because she never develops mentally. The author based the girl’s
character on her experience with her own daughter. I’d read the book as a child
after my Uncle, Donald Potter – who lived in China and taught English there –
mailed it over intending that my mother would read it. He was distressed when
he found out I’d read the very grown-up book instead.
In
graduate school genetics classes I’d read another one of Pearl Buck’s important
books. A heartbreaking memoir, The Child
Who Never Grew shares her real-life experience with her daughter Carol. It
became a classic in medical genetics studies.
Baby
Carol had a PKU condition that went undiagnosed and so wasn’t treated. Her
mother was a celebrated writer but Carol couldn’t speak or care for herself. No
one knew why. Her mother reluctantly placed the little girl in an institution
against her will, and in her memoir described the suffering that separation
caused them both.
To
me, the hospital phone call about my own daughter – and all that it implied –
seemed surreal.
– excerpt from When the Baby Is Not OK: Hopes & Genes
by Jennifer J. Brown, 2025.
Amazon * Apple * B&N * Kobo * Bookbub * Goodreads
Book Links:
Amazon: https://www.amazon.com/dp/B0DT7MZ7YL
Apple: https://books.apple.com/us/book/when-the-baby-is-not-ok-hopes-genes/id6740871196
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Bookbub: https://www.bookbub.com/books/when-the-baby-is-not-ok-hopes-genes-by-jennifer-j-brown
Goodreads: https://www.goodreads.com/book/show/223703166-when-the-baby-is-not-ok
About
the Author
J.J.Brown is a public health advocate and author of memoir, mystery, speculative fiction, noir fiction and poetry books infused with a passion for nature, science and family. Her fiction books address current medical, mental health and environmental issues. Her nonfiction works in health and medical education are published as Jennifer J. Brown, PhD in professional journals. She is a mentor for caretakers and people living with phenylketonuria, PKU, at the National PKU Alliance, NPKUA. When not writing, J.J.Brown enjoys time with her daughters, her companion rabbits Belinda and Maxi, and parakeets Sweety and Penelope. Originally from the Catskill Mountain region of New York State, J.J.Brown lives in New York City in the US.
Website * Bluesky * Amazon * Goodreads
Author Links
Website: https://jjbrownauthor.com/
Bluesky: https://bsky.app/profile/jjunebrown.bsky.social
Amazon: https://www.amazon.com/stores/J-J-Brown/author/B0068QAKIM
Goodreads: https://www.goodreads.com/author/show/5226326.J_J_Brown
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