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When the Baby Is Not OK: Hopes & Genes
What if the baby is not OK?
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.
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.
- GenresMemoir
358 pages, Kindle Edition
Published February 11, 2025
6 people are currently reading
734 people want to read
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Displaying 1 - 10 of 10 reviews
February 28, 2025
J.J. Brown’s memoir When the Baby Is Not OK is a story about love and acceptance. I received an advance review copy and was honored to read it. It’s a detailed account of raising two children with Phenylketonuria, or PKU (a rare disease that I live with). 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.
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.
May 5, 2025
This book is great both as a personal memoir of overcoming hardship in one’s life but also as a guide for how we should be approaching the increased power of genetics in our lives, how it intertwines with our healthcare system, and the ethical questions that come along with it. The author shows through her personal experience of raising two daughters with PKU how we can create a more positive and inclusive society, allowing people with different genes to thrive. This message - grounded in the notion that all people have the right to control their own body, and all people, regardless of disability, have the right to healthcare - is especially important at this point in time.
January 1, 2026
A 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.
Highly recommended.
Highly recommended.
February 23, 2025
When the Baby Is Not OK: Hopes and Genes is a deeply moving memoir of resilience, sacrifice, and triumph. Brown shares her journey of raising two daughters diagnosed with Phenylketonuria (PKU), a rare metabolic condition that brings both emotional and logistical challenges. She vividly portrays the daily struggles of managing PKU, from relentless dietary restrictions to the emotional weight of ensuring her daughters’ well-being. Yet, her story is not just one of hardship—it is a testament to unwavering dedication and strength. Rather than simply enduring these challenges, she fought to provide the best possible care, navigating a maze of medical appointments, dietary complexities, limited resources, and societal misconceptions about PKU.
What makes this memoir even more extraordinary is the depth of personal adversity woven into Brown’s journey. She faced difficult decisions about pregnancy, gave birth without insurance or stable employment, encountered discrimination, and struggled through challenging relationships. Despite these adversities, she remained determined to pursue her education, ultimately earning a PhD and achieving her professional dreams—all while raising her daughters with love and unwavering commitment. Her ability to overcome seemingly insurmountable obstacles is nothing short of inspiring, making her memoir not just a personal triumph but a beacon of hope for others facing similar struggles.
Beyond her personal story, When the Baby Is Not OK: Hopes and Genes provides valuable educational and practical insights into raising children with PKU in a positive and supportive way. Brown offers guidance on meal planning, working with healthcare providers, and educating others to create a more inclusive and understanding community. One of the most compelling aspects of her memoir is her ability to maintain a positive outlook. She shares strategies for building a nurturing home environment where her daughters could thrive emotionally, socially, and intellectually. She emphasizes the importance of open communication, using words and phrases that are kind and compassionate, fostering trust, and ensuring her daughters grow up feeling empowered. Her story also serves as an educational resource on genes, DNA, the prevalence and incidence of PKU, and the critical role of newborn screening.
The narrative flows with emotion and depth, drawing readers into a mother’s world from the very first page. Brown’s determination to provide a nurturing life for her daughters creates a sense of resilience that resonates throughout the book. The pacing builds a powerful arc of growth and triumph, leaving readers not only moved by her journey but also inspired to face their own challenges with courage.
Her story echoes the emotional depth of a classical masterpiece—much like Beethoven’s Symphony No. 9 in D Minor, particularly the triumphant Ode to Joy. Just as Beethoven transformed personal struggle, including profound deafness, into a triumphant and celebratory composition, Brown’s journey moves from hardship to victory. The tension and emotional weight of her early struggles mirror the symphony’s somber opening movements, while her eventual success—culminates in a resounding message of hope. Both her memoir and Beethoven’s symphony reveal a universal truth: the human spirit can rise above adversity and create something extraordinary from struggle. Brown’s transformation from an overwhelmed young mother to a scholar is both heart-wrenching and uplifting, leaving readers with a powerful message of perseverance and triumph.
What makes this memoir even more extraordinary is the depth of personal adversity woven into Brown’s journey. She faced difficult decisions about pregnancy, gave birth without insurance or stable employment, encountered discrimination, and struggled through challenging relationships. Despite these adversities, she remained determined to pursue her education, ultimately earning a PhD and achieving her professional dreams—all while raising her daughters with love and unwavering commitment. Her ability to overcome seemingly insurmountable obstacles is nothing short of inspiring, making her memoir not just a personal triumph but a beacon of hope for others facing similar struggles.
Beyond her personal story, When the Baby Is Not OK: Hopes and Genes provides valuable educational and practical insights into raising children with PKU in a positive and supportive way. Brown offers guidance on meal planning, working with healthcare providers, and educating others to create a more inclusive and understanding community. One of the most compelling aspects of her memoir is her ability to maintain a positive outlook. She shares strategies for building a nurturing home environment where her daughters could thrive emotionally, socially, and intellectually. She emphasizes the importance of open communication, using words and phrases that are kind and compassionate, fostering trust, and ensuring her daughters grow up feeling empowered. Her story also serves as an educational resource on genes, DNA, the prevalence and incidence of PKU, and the critical role of newborn screening.
The narrative flows with emotion and depth, drawing readers into a mother’s world from the very first page. Brown’s determination to provide a nurturing life for her daughters creates a sense of resilience that resonates throughout the book. The pacing builds a powerful arc of growth and triumph, leaving readers not only moved by her journey but also inspired to face their own challenges with courage.
Her story echoes the emotional depth of a classical masterpiece—much like Beethoven’s Symphony No. 9 in D Minor, particularly the triumphant Ode to Joy. Just as Beethoven transformed personal struggle, including profound deafness, into a triumphant and celebratory composition, Brown’s journey moves from hardship to victory. The tension and emotional weight of her early struggles mirror the symphony’s somber opening movements, while her eventual success—culminates in a resounding message of hope. Both her memoir and Beethoven’s symphony reveal a universal truth: the human spirit can rise above adversity and create something extraordinary from struggle. Brown’s transformation from an overwhelmed young mother to a scholar is both heart-wrenching and uplifting, leaving readers with a powerful message of perseverance and triumph.
February 21, 2025
As a mother of a child who was hospitalized every month for the first year of his life, the title of this memoir grabbed my attention and hooked me from the start. My baby was not okay, and I had to fight doctors for three years to force them to give him a diagnosis of asthma, a very treatable disease that impacts 1 in 12 people in the United States (U.S.). Now imagine that your baby has a much rarer disease, i.e., only 1 in 15,000 children in the U.S. are born with it. Your job as a parent has just become 15,000 times harder.
The author of this memoir, Dr. Jennifer Brown is not only a mother, she’s also a PhD in Genetics, an irony that hit her hard. What were the odds of a geneticist having a baby with a rare disease? Very rare. After the shock of the diagnosis wore off, being a scientist, she calculated all the odds and all the issues associated with PKU. No one and no literature painted a rosy picture for her baby. All the negative consequences of untreated PKU were dumped on her with little good news provided. Never one to give up, Dr. Brown persisted at finding all the information she could on how to treat her baby’s condition. This memoir is part detective novel, part “I’m mad as hell and I’m not going to take it anymore!” I was rooting for her at every turn, watching her overcome the double obstacles of poverty and prejudice.
Dr. Brown provides an accessible tour of the science associated with a PKU diagnosis, as well as the day to day struggle of a mother who isn’t sure where her next meal is coming from. When she chose to have a second baby, an old male physician shouted, “Tie the tubes!” at her and the surrounding medical personnel. Eugenics, an idea whose time should long be gone, popped up its ugly head—and it wasn’t the last time she was urged to have sterilization.
The author creates a vivid picture of living in Florida with the family of the baby’s father, then moving to New York to finish her academic work. She intersperses the joy of the grandparents with the violence of the baby’s father—and a judicial system that favors the father over the mother. She persevered and finally overcame poverty to become an independent woman, a highly recognized researcher, author, and patent holder.
This book is a gift to all parents and family members who welcome a new baby who is diagnosed with PKU. Not only does Dr. Brown provide the reader with her personal story, she gives everyone the science of the condition in an easy to read format. She gives parents resources that she herself did not have early on in her parenting. This is an extraordinary memoir that combines the best of personal experience, scientific facts, and a community of support in one package.
I received this book as an ARC and highly recommend this book to anyone affected by the diagnosis of PKU and to healthcare providers so they can learn more about this manageable condition.
The author of this memoir, Dr. Jennifer Brown is not only a mother, she’s also a PhD in Genetics, an irony that hit her hard. What were the odds of a geneticist having a baby with a rare disease? Very rare. After the shock of the diagnosis wore off, being a scientist, she calculated all the odds and all the issues associated with PKU. No one and no literature painted a rosy picture for her baby. All the negative consequences of untreated PKU were dumped on her with little good news provided. Never one to give up, Dr. Brown persisted at finding all the information she could on how to treat her baby’s condition. This memoir is part detective novel, part “I’m mad as hell and I’m not going to take it anymore!” I was rooting for her at every turn, watching her overcome the double obstacles of poverty and prejudice.
Dr. Brown provides an accessible tour of the science associated with a PKU diagnosis, as well as the day to day struggle of a mother who isn’t sure where her next meal is coming from. When she chose to have a second baby, an old male physician shouted, “Tie the tubes!” at her and the surrounding medical personnel. Eugenics, an idea whose time should long be gone, popped up its ugly head—and it wasn’t the last time she was urged to have sterilization.
The author creates a vivid picture of living in Florida with the family of the baby’s father, then moving to New York to finish her academic work. She intersperses the joy of the grandparents with the violence of the baby’s father—and a judicial system that favors the father over the mother. She persevered and finally overcame poverty to become an independent woman, a highly recognized researcher, author, and patent holder.
This book is a gift to all parents and family members who welcome a new baby who is diagnosed with PKU. Not only does Dr. Brown provide the reader with her personal story, she gives everyone the science of the condition in an easy to read format. She gives parents resources that she herself did not have early on in her parenting. This is an extraordinary memoir that combines the best of personal experience, scientific facts, and a community of support in one package.
I received this book as an ARC and highly recommend this book to anyone affected by the diagnosis of PKU and to healthcare providers so they can learn more about this manageable condition.
February 5, 2025
The Wishing Shelf Book Awards
EDITORIAL REVIEW
16th January 2025
TITLE: When the Baby is Not OK; Hopes & Genes
AUTHOR: Jennifer J. Brown PhD
Star Rating: 5
‘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
REVIEW
I must say, ‘When the Baby is Not OK’ is a wonderful book. The writer, Jennifer B. Brown, is a woman who knows her genetics. So when her baby is diagnosed with PKU (as is her second daughter), she’s very much up to the challenge. But this is not simply a ‘tell all’ of the ups and considerable downs of trying to help her children; but it’s also an insight into what genetics is, the history of genetics (particularly in the US), and how a mother’s love can do so much for a child, no matter how big the obstacle is that is facing her.
There were a number of elements to this book I particularly enjoyed. Firstly, I very much enjoyed the writing style. It’s written in an almost chatty sort of way, as if the author’s telling the reader all of this over a cup of coffee. Secondly, there’s a lot of medical info in the book, but it’s always secondary to the ‘story’; and it’s never overwhelming. So, pretty much anybody can understand the text, even if you don’t happen to be a medical professional. And thirdly – and this is the best part – it’s just so interesting. Whether she’s discussing the sickle cell, the outlook of doctors, or the costs of getting a DNA test, it’s all totally fascinating.
So, who is this book for? Well, it would probably go down best with doctors or anybody working in health care. Medical students, I suspect, would find it particularly interesting. Also, parents of children with a genetic-related disability might get a lot from this book; and when I say, ‘a lot’, I’m not just referring to facts – although there are plenty of them too; I think they also will enjoy getting to know the author, and possibly they’ll be inspired by her. And what a wonderful thing that is.
A ‘Wishing Shelf’ Book Review
www.thewsa.co.uk
EDITORIAL REVIEW
16th January 2025
TITLE: When the Baby is Not OK; Hopes & Genes
AUTHOR: Jennifer J. Brown PhD
Star Rating: 5
‘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
REVIEW
I must say, ‘When the Baby is Not OK’ is a wonderful book. The writer, Jennifer B. Brown, is a woman who knows her genetics. So when her baby is diagnosed with PKU (as is her second daughter), she’s very much up to the challenge. But this is not simply a ‘tell all’ of the ups and considerable downs of trying to help her children; but it’s also an insight into what genetics is, the history of genetics (particularly in the US), and how a mother’s love can do so much for a child, no matter how big the obstacle is that is facing her.
There were a number of elements to this book I particularly enjoyed. Firstly, I very much enjoyed the writing style. It’s written in an almost chatty sort of way, as if the author’s telling the reader all of this over a cup of coffee. Secondly, there’s a lot of medical info in the book, but it’s always secondary to the ‘story’; and it’s never overwhelming. So, pretty much anybody can understand the text, even if you don’t happen to be a medical professional. And thirdly – and this is the best part – it’s just so interesting. Whether she’s discussing the sickle cell, the outlook of doctors, or the costs of getting a DNA test, it’s all totally fascinating.
So, who is this book for? Well, it would probably go down best with doctors or anybody working in health care. Medical students, I suspect, would find it particularly interesting. Also, parents of children with a genetic-related disability might get a lot from this book; and when I say, ‘a lot’, I’m not just referring to facts – although there are plenty of them too; I think they also will enjoy getting to know the author, and possibly they’ll be inspired by her. And what a wonderful thing that is.
A ‘Wishing Shelf’ Book Review
www.thewsa.co.uk
March 10, 2025
J.J. Brown's "When the Baby Is Not Okay" is one of the best memoirs I've read in a long time. I've read JJ's short stories and other fiction, so I knew she was a good writer, but this is her best book yet. She writes with such raw honesty and fierceness about so many aspects of being a woman, a scientist, a mother. She writes unflinchingly of what it's like to work within a Ph.D. program geared for men. How her pregnancy put her career off balance because of the prejudice/sexism of others. She writes endearingly of pregnancy and her expectations. Then the fear and chaos of being told that her baby is NOT okay and has a serious illness. J.J. explains PKU so well (I knew little about it). All mothers/ parents who have a child with physical challenges will learn much from J.J.'s experiences and knowledge. But in any way, this is just a fascinating and excellent read about 'life' as a woman and a mother.
April 12, 2025
I have always enjoyed more scientific memoirs about health problems. This was an excellent book about having a baby with PKU. I've heard of PKU in passing. In high school I heard one of my friends say she couldn't drink a certain soda because of her PKU. Other than that I knew nothing about it. The end of the book where she discusses how she doesn't focus on what her children can't eat but what they CAN should be required for every parent. I hear so often parents saying no when they could be saying, "Instead of that, why don't you eat some pretty bell peppers" and the author tells how she has used spices and seasonings to make fruits and veg appeal to children. Heck, I wanted to eat at the author's meat-free house!
November 30, 2025
Since completing this book, I have been wondering all day how many PKU babies are born to mothers who are:
1) Interested in cooking every day,
2) At the top of the intelligence scale,
3) Accustomed to data and recordkeeping,
4) Facile with numbers, quantities and percentages,
5)Destined to live a healthy life until the child reaches adulthood.
PKU is found once in about ten thousand births. The US will have about three and a half million births this year. So about 350 children are expected to be born this year with the condition. No particular genetic link between PKU and high intelligence was referenced in this book. Unless there is such a link that we are unaware of, we can expect IQ to be distributed evenly among the PKU population. Therefore about half the babies born this year are likely to have parents of below average IQ. I wonder what the future is like for these children in particular. These 175 children, and also, what is life like for the children with parents who are somewhat smarter, but nonetheless, perhaps not particularly able to cope with challenging life circumstances.
The author has not had an easy life, yet she has managed to devote herself to providing a near perfect diet for her two children who require for their development and their health, a very particular kind of low protein diet. She attributes her ability to do this to two things: her facility with numbers and her love of cooking or food preparation. Clearly, she is also of very high intelligence; we know this because she has earned a Ph.D. Also, she has the smarts to be a darn good writer, and a very well organized one at that.
Dr. Brown has conquered great odds to raise two children who are now living very successful lives despite their metabolic situation and I strongly applaud her for this. But I wonder what happens to the children who are not lucky enough to have been brought into the world by a dynamo of a determined woman and one who is smart enough to do the research, and the counting, and the food prep required every single meal, every single day for the entire childhood and adolescence of that individual.
1) Interested in cooking every day,
2) At the top of the intelligence scale,
3) Accustomed to data and recordkeeping,
4) Facile with numbers, quantities and percentages,
5)Destined to live a healthy life until the child reaches adulthood.
PKU is found once in about ten thousand births. The US will have about three and a half million births this year. So about 350 children are expected to be born this year with the condition. No particular genetic link between PKU and high intelligence was referenced in this book. Unless there is such a link that we are unaware of, we can expect IQ to be distributed evenly among the PKU population. Therefore about half the babies born this year are likely to have parents of below average IQ. I wonder what the future is like for these children in particular. These 175 children, and also, what is life like for the children with parents who are somewhat smarter, but nonetheless, perhaps not particularly able to cope with challenging life circumstances.
The author has not had an easy life, yet she has managed to devote herself to providing a near perfect diet for her two children who require for their development and their health, a very particular kind of low protein diet. She attributes her ability to do this to two things: her facility with numbers and her love of cooking or food preparation. Clearly, she is also of very high intelligence; we know this because she has earned a Ph.D. Also, she has the smarts to be a darn good writer, and a very well organized one at that.
Dr. Brown has conquered great odds to raise two children who are now living very successful lives despite their metabolic situation and I strongly applaud her for this. But I wonder what happens to the children who are not lucky enough to have been brought into the world by a dynamo of a determined woman and one who is smart enough to do the research, and the counting, and the food prep required every single meal, every single day for the entire childhood and adolescence of that individual.
April 26, 2025
Jennifer is a great story teller - both in fiction and now in this true life story about her personal experiences. An easy read, even for those not versed in medical fields. A must read for anyone who is expecting, has a baby with any challenging condition, and moms and dads everywhere.
Displaying 1 - 10 of 10 reviews