Geneticist’s Memoir of Pregnancy, Birth of Babies with Rare Disease
Intimate journey navigates today’s most pressing women’s issues.
When the Baby is Not OK: Hopes & Genes, a new memoir of pregnancy, childbirth and parenthood from geneticist Jennifer J. Brown, shines a light on what to expect after universal newborn screening. Out of nearly 4 million who get screened each year, about 12 thousand babies are diagnosed with a so-called “rare disease” in the US alone. Brown’s daughters were two of them. It was in their DNA.
Nine days after childbirth in New York, Brown’s baby’s diagnosis with a rare genetic condition known as phenylketonuria (PKU) came as a complete surprise. A graduate student in genetics at Cold Spring Harbor Laboratory at the time, the news radically changed the course of Brown’s life. Her journey as a single mother takes a deep dive into challenges of health equity, eugenics, DNA testing, rare disease and patient rights.
The true stories in the 24 chapters of Brown’s memoir are forged in lived experience, a journey through pressing social issues of the times. From teenage pregnancy to sexism in science, from abortion to pregnancy and childbirth, and from DNA testing to healthcare bias regarding rare disease and disability. The writing is born of empathy and informed by evidence, with an extensive bibliography of over 200 primary sources. The author effectively presents a courageous call to action for more compassionate healthcare in the US today.
“Brown’s work as a scientist is a natural springboard for her spotlight on women in STEM… The result is a relatable, informative, and empathetic narrative that inspires as much as it educates.”
Book Audience
This new memoir is relevant now for readers interested in women’s life experiences, all pregnant people, for expectant parents, medical trainees and healthcare providers. The author’s experience will be of special interest to members of the rare disease and PKU communities as well as patient advocates, genetics counselors and public health workers.
Read a free book excerpt at this link — FREE BOOK EXCERPT
Praise for When the Baby Is Not OK: Hopes & Genes
Editorial Reviews:
“This work balances a compelling mix of personal experience, emotional exploration, and scientific knowledge. Although the book initially follows the thread of Brown’s memories, it’s effectively expanded by her research. For example, her discussions of fertility and pregnancy are initially introduced due to their connection to the author’s personal experience, but the multifaceted sections grow until they’re informative essays, revealing, in great depth, the broader implications of these topics and how they touch the lives of many others. Amid specific, practical discussions of caring for children with PKU, for example, she tells stories of many others, including famous names such as Nobel Prize–winner Pearl S. Buck and entertainer Dale Evans, who were also mothers of children with genetic disorders. Frequently, the book refreshingly reminds readers how all lives are intertwined. A deeply emotional and expansive story of growth, connection, and resilience. – Kirkus Reviews
“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 Reviews by Publisher’s Weekly
“A truly fascinating insight into genetic disorder, phenylketonuria (PKU), written by an author who knows how to put over the ‘complex’ in an accessible, interesting and compelling way. Highly recommended!” – The Wishing Shelf (UK) editorial reviewers
“J.J. Brown’s memoir When the Baby Is Not OK is a story about love and acceptance. It’s a detailed account of raising two children with phenylketonuria, or PKU. But it also draws upon her knowledge and experience as a scientist with a PhD in genetics. A unique blend of information and lived experience, this book not only informed me…it moved me deeply. It’s an inspiring story of overcoming adversity motivated by fierce love for her daughters. It reminds me that advocacy begins and ends with fighting for those you love. I believe this book will become a healing presence for anyone who reads it,” – Kevin Alexander, Vice President of the Louisiana Metabolic Disorders Coalition.
“Powerful and unflinching memoir interwoven with a wide-ranging social history, offering a compelling examination of motherhood, medical care, and genetic heritage through the lens of PKU,” – Pauline O’Connor, (UK) Patient Advocate.
“When the Baby Is Not OK: Hopes and Genes offers a profoundly moving narrative of resilience, sacrifice, and accomplishment. The central figure, who gave birth to two daughters diagnosed with phenylketonuria (PKU), confronts an array of emotional and logistical challenges associated with raising children with a rare metabolic condition. The memoir captures intense struggles with the daily management of PKU, from strict dietary monitoring to the emotional toll of caring for two daughters. However, the story does not merely focus on the hardships; it also highlights resilience and unwavering dedication to her daughters’ well-being. Throughout the journey, the author is not merely surviving; she is striving to give them the best possible care while also navigating the labyrinth of medical appointments, dietary changes, lack of resources and societal misunderstandings surrounding PKU.” – Kendra J. Bjoraker, PhD, LP, Pediatric Neuropsychologist.
Book Availability and Formats
Available nearly everywhere internationally from February 11th, 2025
Ebook $14.99 USD ISBN: 9798230229711 (Apple Books, Barnes & Noble, Fable, Kindle, Kobo and more.)
Paperback $19.99 USD ISBN: 979-8307274781 (Amazon US UK DE FR ES IT NL PL SE JP CA AU)
Hardcover $23.99 USD ISBN: 979-8307366721 (Amazon US UK DE FR ES IT NL PL SE)
Kindle $14.99 USD ASIN: B0DT7MZ7YL (Amazon US UK DE FR ES IT NL JP BR CA MX AU IN)
Jennifer J. Brown has a PhD in genetics from SUNY Stony Brook for earlier studies at Cold Spring Harbor Laboratory in New York with Nobel Prize laureate Barbara McClintock. This is Brown’s 11th published book as an independent author. Brown serves as a mentor for people diagnosed with PKU and their families at the non-profit National PKU Alliance (NPKUA) in the US. 10% of all author book royalties are donated to non-profit The Arc, for people with intellectual and physical disabilities. Contact the author at jjbrown@jjbrownauthor.com.
Book Chapters
Chapter 1. Hospital’s Call
Chapter 2. Playing with Genes
Chapter 3. False Start
Chapter 4. High Price of Pregnancy
Chapter 5. Keeping Secrets in Her Genes
Chapter 6. Superbaby Dreams
Chapter 7. Sexism in Science
Chapter 8. Wild Childbirth
Chapter 9. Newborn’s First Test
Chapter 10. Intimacy, Hunger & Bonding
Chapter 11. Baby Blues & Grays
Chapter 12. Survival Genes
Chapter 13. Love & Attachment
Chapter 14. Finding Family Love
Chapter 15. Work Betrayals
Chapter 16. Year of Wonder
Chapter 17. Finding Sisterhoods
Chapter 18. Eugenics, Evolution & Me
Chapter 19. Forcing Change
Chapter 20. Superheroes & Superpowers
Chapter 21. In Food, Is Good Medicine
Chapter 22. Magic of a Plant-Based Diet
Chapter 23. Food-Positive Home
Chapter 24. Hopes & Dreams