Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth

by Megan Nix

This "compulsively readable memoir...brings to light an issue that has been too long ignored...An immensely important book" (Emily Oster, New York Times bestselling author of Expecting Better and Cribsheet).

A story of a mother’s fierce love for her exceptional child and her courageous journey to break the silence about a hidden risk to pregnant "both a beautiful family story and an urgent call to action… [A] moving, potentially life-altering book" (Robert Kolker, author of #1 New York Times bestseller Hidden Valley Road ).

After a seemingly uneventful pregnancy, Megan Nix’s second daughter, Anna, was born very small and profoundly deaf. Megan and her husband, Luke, learned that Anna could have lifelong delays due to an infection from a virus they had never heard cytomegalovirus, or CMV, which Megan had unwittingly contracted from her toddler during pregnancy.

Megan was electrified by this knowledge. She had been warned, while pregnant, about the risks of saunas, sushi, and unpasteurized cheese, a lack of folic acid, and an excess of kitty litter. She knew to fear a slew of genetic syndromes she could do little to prevent. But she had not been told that CMV is contagious in the saliva of one out of three toddlers, spread through a kiss, a shared cup, a bite of unfinished toast. She had not been told that the stakes were high, that congenital CMV causes more birth defects and childhood disabilities—including blindness, deafness, cerebral palsy, epilepsy, and autism—than any infectious disease. Or that some of these disabilities are evident at birth, but others appear suddenly at age two or three and are never traced back to congenital CMV.

Remedies for Sorrow unfolds across the dramatic landscape of Sitka, Alaska, where Luke makes his living as a salmon fisherman. There, Megan struggles to meet Anna’s needs and dives deeper into the mystery of why no one—not her OBGYN, not her toddler’s pediatrician—had mentioned CMV, despite the staggering cost of this silence to families and children like Anna. From this rugged and beautiful place comes a memoir about the boundless capacity of mothers, the extraordinary child that is Anna, and the lifesaving power of truth.

Genres: Memoir, Nonfiction, Medicine, Audiobook, Medical, Disability, Parenting

336 pages, Hardcover

Published April 18, 2023

Reviews

[Shannon · Rating 5 out of 5]

A crazily scary and eye-opening memoir about one mother's experience giving birth to a baby with congenital CMV (Cytomegalovirus) - a common virus that infects people of all ages and can be contracted from small children. Mothers are particularly prone and it can be passed along to fetuses!

The scariest part is that for so long this was NOT something doctors routinely screened for during pregnancy or even at birth unless there were symptoms and if left untreated this CMV has been linked to autism, cerebral palsy and many other disabilities (blindness, deafness, etc).

In her memoir Megan writes about how her second baby was finally diagnosed with CMV and her fight to increase awareness and make the medical community make testing more routine. Great on audio read by the author and HIGHLY recommended for anyone expecting or trying to get pregnant! Many thanks to @prhaudio for a complimentary ALC in exchange for my honest review!

[Sarah · Rating 5 out of 5]

Saw it on display at the library, picked it up, read it quickly. Congenital CMV is a serious life-altering disease which, despite having two pregnancies of my own, I knew next to nothing about. This is a problem that has a solution but needs attention. Education. Testing. Vaccines. Support. The author makes a compelling argument for all of these, and as the mother of a child diagnosed with congenital CMV, gives us the raw insight into how much better we can do.

[NJB · Rating 5 out of 5]

Painfully raw, honest memoir about a virus every pregnant woman should know about. I had 3 children & am a grandmother of 2 & I had never heard of congenital CMV. It’s incredible that every baby is not tested for this at birth & every woman is not counseled how best to prevent passing this on to a developing fetus. I applaud the author for her words of spirituality & thoughts on normalizing disabilities & her efforts to find therapies and adaptations to help her daughter and other children. Moms are going to be the ones to force the medical community and the state health departments to educate parents about prevention, antiviral therapies and post diagnosis therapies. Remedies for Sorrow is an eye-opening read.

[Cote · Rating 5 out of 5]

Earlier this year my best friend had a baby with congenital CMV. Despite CMV being the #1 leading cause of congenital infection worldwide, I had never once heard of this disease. Neither had she, until her baby was diagnosed with it.

1 out of every 3 kiddos will be infected with CMV by the time they’re five years old, and nearly 50% of adults will have it by the time they’re middle age. And yet we rarely hear anything about it. Our OBs tell us to avoid lunchmeat and sushi, all about toxoplasmosis and herpes, but nothing about the most common infection that can be spread through kissing your toddler or sharing a straw. There’s very little information about CMV in doctor’s offices or even online, and very few pieces of literature.

This book changes that! It’s written by a CMV mama who is also an extraordinary writer and researcher. She shares her daughter’s journey with congenital CMV, which caused her to be totally deaf at birth, and how she has advocated for her and the entire CMV community.

I listened to this book on audio (narrated by the author) and cried through so many parts. It’s heartfelt and touching and gut wrenching and something that everyone should read, especially if you’re pregnant or planning on being pregnant sometime.

Thank you, Megan, for writing this extremely important gift!

[Maryann · Rating 5 out of 5]

Picked this up by happenstance from a new and noteworthy non-fiction display at Northshire Bookstore in Saratoga. Raw and poignant and unabashedly honest look at a little known scourge that affects so many lives. Shame on the medical profession as usual for its dismissiveness. Thankfully one mother’s determination could not be silenced.

[Cindy · Rating 4 out of 5]

Memoirs, especially ones telling the story of an illness, are always difficult for me to rate. I want to give them all 5s for the sorrow they have suffered. This one was an important story to tell and most importantly the author has worked tirelessly to change laws that can have a substantial impact. That alone deserve a 5. However at times this book felt like too much of a cathartic exercise for the author (perhaps that’s true of all memoirs). I think this story could have been told in less pages.

Thank you to NetGalley for providing me with an early release in exchange for a fair and honest review.

[Maggie Sleigh · Rating 5 out of 5]

An excellent read that I could not put down. The author is a friend of my cousin Erin Swetnam. She, like Erin, has a child born with congenital CMV which in both of these cases caused deafness among other things. This is her story and it encapsulates motherhood, frustrations with the medical system, the precious value of all life, spirituality, and dealing with grief. My cousin Erin and her son Matthew enter the book with 2 hours and 26 minutes left so in the latter fourth if you are interested in reading/listening to it!

[Sandra Heinzman · Rating 5 out of 5]

Most powerful book I’ve read this year. It’s not only about CMV, it’s a book about family, Alaska, deafness, medicine,and stories about families. Every pregnant woman, especially if there’s a toddler in the home, needs to read this book and learn about CMV and the birth defects and other issues it causes. The stories are heartbreaking. CMV is contagious in the saliva of one out of three toddlers, spread through a kiss, a shared cup, a bite of shared food. Congenital CMV causes more birth defects and childhood disabilities, including blindness, deafness, cerebral palsy, epilepsy and autism, than any other infectious disease! Some of these disabilities are seen at birth, but many don’t present until age 2 or 3, and are never traced back to congenital CMV.

This memoir is beautifully written, well researched, and filled with many CMV stories. I’m so glad the medical community is now waking up to it, and laws and procedures to screen for it are now happening.

Highly recommend this book!

[Sarah Trustem · Rating 5 out of 5]

Remedies for Sorrow is a moving and eye opening book. As a mother to a child with cCMV, I found parts of it difficult to read because they reflected my own experiences, but that is also what makes it so meaningful.

Megan Nix writes with clarity, strength, and deep compassion. Her research is impressive, and her willingness to confront the silence around cCMV and the failures of the medical community that affect so many families is both brave and inspiring.

This book is beautifully written, honest, and essential. I am grateful it exists. Bravo, Megan! You are amazing.

[Karyl · Rating 4 out of 5]

I noticed this book on display at the Newport Public Library, featured in the New Non-fiction Books, and considering I have two children of my own, I knew I had to read this. I have always been fascinated by medicine, especially with how diseases affect our bodies, yet most people I had never heard of CMV (cytomegalovirus). This book can be terrifying for a mother to read.

It may be because my kids are nearly four years apart in age that we escaped this virus wreaking havoc on our lives; toddlers can frequently pick it up from daycare or other children and pass it along to their mothers through kissing or finishing the toddler’s food or changing wet diapers, as it’s present in saliva and urine. For that I am grateful, but it makes my heart hurt that so many children have long-term effects from a virus that could have been prevented with just a little more information imparted to the parents.

Megan Nix blends medical knowledge and research with her own experiences of this disease. Her second daughter Anna was born with congenital CMV — very small at birth, profound hearing loss, a smaller head, all classic markers of CMV that has crossed the placenta and affected the growing fetus. I especially appreciated Nix’s agonizing on whether to fit Anna with cochlear implants. While I myself am not Deaf, I do know it’s a vibrant and important community, and many Deaf and hard of hearing people don’t feel their deafness needs to be remedied by hearing aids or cochlear implants. Reading how Nix carefully considered all viewpoints, especially the importance of belonging to the the Deaf community without hearing assistance, reminded the hearing readers that some Deaf people may not want to be “fixed.”

While I am not personally a religious person, I have attended a few services with friends who are Russian Orthodox, so I am a little familiar with the services that Nix describes. I agree with her that they are some of the most beautiful ones I’ve ever attended; the music just seems to lift the congregation and bring them closer to their God.

This sort of memoir is my favorite type, a memoir written by someone who isn’t famous but has a good reason for sharing their story with the greater world. And Nix can most certainly write. This book is engaging and beautiful, yet incredibly informative without getting the reader bogged down in statistics. Nix shows us several children with CMV and their parents, helping us to relate to the struggles of parenting in general but how much more difficult it can be for kids with physical disabilities and motor delays resulting from a virus contracted in the womb.

I applaud Nix’s vision to bring more awareness to CMV, and the information in the epilogue that it can be easily detected with a high accuracy using the newborn Dried Blood Spot is encouraging. I hope the medical community can finally begin to realize the importance of educating parents on CMV and screening every baby born in America for it, as is done for so many other harmful diseases.

[Michelle Kidwell · Rating 5 out of 5]

Remedies for Sorrow
An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth
by Megan Nix
Pub Date 18 Apr 2023
Doubleday Books, Doubleday
Biographies & Memoirs | Health, Mind & Body | Nonfiction (Adult)


Doubleday Books and Netgalley have provided me with a copy of Remedies for Sorrow for review:



Despite a seemingly uneventful pregnancy, Megan Nix's second child, Anna, was born very small and profoundly deaf. During Megan's pregnancy, she unwittingly contracted cytomegalovirus from her toddler, which may cause lifelong delays for Anna, due to an infection caused by a virus she had never heard of: cytomegalovirus, or CMV.



Astonished by this knowledge, Megan was electrified. While pregnant, she had been warned of the risks associated with saunas, sushi, unpasteurized cheese, a lack of folic acid, and an excess of kitty litter. It was clear to her that there were a number of genetic syndromes she could do little to prevent. However, she was not informed that CMV is contagious in the saliva of one out of every three toddlers, and can be spread through a kiss, a shared cup, or an unfinished bite of toast. She was not informed that the stakes were high, that congenital CMV causes more birth defects and childhood disabilities than any other infectious disease, including blindness, deafness, cerebral palsy, epilepsy, and autism. Others may appear suddenly at age two or three and cannot be traced back to congenital CMV, while others are evident at birth.



In Remedies for Sorrow, Luke makes his living as a salmon fisherman in Sitka, Alaska. Despite the staggering cost of this silence to families and children like Anna, Megan struggles to meet Anna's needs and delves deeper into the mystery of why no one has mentioned CMV to her OBGYN or the pediatrician of her toddler. This rugged and beautiful place has given rise to a memoir about the boundless capacity of mothers, the extraordinary child that is Anna, and the lifesaving power of the truth.



I give Remedies For Sorrow five out of five stars!


Happy Reading!

[Kileen Medearis · Rating 5 out of 5]

This book was wonderful. Megan's writing, especially on the many intricacies of motherhood, left me in tears many times. Her story needs to be heard. I will be recommending this book to all women in their child bearing years.

[Jennifer · Rating 5 out of 5]

Very informative and surprising. I was unaware of this congenital disease throughout all of my pregnancies. This book is also a helpful perspective on parenting disabled children or understanding the fears, joys, and triumps of those walking that path.

[Kate Rooney · Rating 4 out of 5]

Highly recommend as someone who loves an engaging and personal NF read on a new-to-me topic.

More cautiously recommend as a very anxious person who frequently gets pregnant surrounded by viral toddlers.

[Liza · Rating 5 out of 5]

So thankful to read about another mom’s experience of congenital CMV. I could relate to so much of what was shared. This book was a great balance of information and reflection. Thanks for your advocacy, Megan! You made another significant contribution :)

[Raquel · Rating 4 out of 5]

Megan Nix’s second daughter, Anna, was born in 2015 after a seemingly uneventful pregnancy. The baby was very small and failed her newborn hearing tests.

When Anna’s pediatrician said he wanted to test her for something called congenital CMV, Nix was taken aback.

She had never heard of it.

She was stunned to find out that CMV — or cytomegalovirus — was a common virus, highly contagious and found in the saliva of one in three toddlers.

If you catch it as a pregnant woman and it crosses the placenta, it could pose serious problems for the fetus.

Once the baby is born, CMV can manifest in all sorts of different ways: deafness, blindness, cerebral palsy, developmental delays, epilepsy, lung disease, autism and even death.

Some of these symptoms can take years to appear and are never traced back to congenital CMV.

This one virus causes more birth defects and disabilities in children than any other infectious disease. Yet somehow 91% of Americans don’t even know it exists.

“The revelation that CMV was so damaging and so silenced shocked me,” Nix tells The Post.

“I felt a shock mixed with a deep upset that this is happening — and nothing is really being done to support the families dealing with it.”

Read the rest of my interview with the author here: https://nypost.com/2023/05/13/one-vir...

[Misty Schoephoerster · Rating 2 out of 5]

I wholeheartedly appreciate this authors own sorrows in regards to her child Anna with CMV and her experience with the medical community but at times it didn’t necessarily read as a memoir to me. It read kind of like a scholarly article at times with a lot of jargon, definitions, policies, etc., that is hard for a reader without CMV impacts in their lives to truly tune into for that long. It almost comes off like a justification for why people should care about CMV and not necessarily like a memoir, which this book comes off as like beating you over the head. I don’t want to criticize the book too much as memoirs are an important right of passage for someone who has gone through something very traumatic and where they felt very alone or unsupported. I’m glad I read it but it would not be the first memoir I would recommend to someone. I think there’s a way to tell a very niche experience in a way that a wide audience would appreciate. I would definitely recommend this to someone who has CMV or a child with CMV or feels unheard by the medical community.

[Alia B · Rating 5 out of 5]

CMV is responsible for the majority of birth defects, delays, and miscarriages than any other illness. So why don't we know about it?

Reading this book, I find it absolutely insane that this information is neither researched thoroughly by the medical community, nor revealed to the public. This virus is easy to prevent, and most people don't even know about its danger to their children.

This book is for aspiring healthcare workers, for future parents, and everyone who would want to know that this virus lives on in their DNA for the rest of their lives. CMV even had an impact on morbidity in COVID-19 patients. We need to know more about this. I learned so much reading this because I, like many people, had never known about CMV.

[Emma · Rating 5 out of 5]

Great memoir/nonfiction crossover about a family impacted by congenital CMV, a viral condition that is the leading cause of newborn disability but is not tested for or warned against by OBs during pregnancy. I was really into the medical journey parts but think this would be a good read even for people who aren’t as interested in medicine. Yet another story of parents investing insane time/brainpower to find a diagnosis/support their children and makes me sad to think about all the children impacted by this whose parents/doctors don’t have the time/resources so they end up going undiagnosed/untreated.

[Rhonda Keliipio · Rating 5 out of 5]

A gripping and absolutely beautiful story of a warrior mother. Her quest to bring CMV to light in hopes of creating change. She shares openly and transparently the journey her family has traveled dealing with this disease. She is brave and candid through the unknown. She carves a path encouraging each of us to be better humans, better wives, mothers and friends. Her perspective sheds light into a world many don’t know and one we would be terrified to encounter. She is a champion not only to her family but to anyone too familiar with this disease. She is the spark for a torch that will long outlive her. Bravo Megan for speaking your truth!

[Britt Morgan · Rating 5 out of 5]

As a hearing mom of a Deaf child, listening to this audio book was so therapeutic and comforting. Megan writes (and talks) about her raw feelings and the rollercoaster of challenges in managing her child's CMV diagnosis and hearing loss. The lack of public awareness of CMV is certainly troubling and while I've discovered that through my own journey, I was truly enlightened with the research provided by Megan. I jotted down quite a few stats and motherhood mindsets that Megan breathes into this book. Thank you for sharing your story, Megan!

[Abby Wawers · Rating 5 out of 5]

This is potentially the best book I’ve read this year. It combines two of my favorite things which are medicine/medical dramas and beautiful storytelling
I had no idea this condition, congenital cmv, existed let alone how many families it impacts. I want to tell everybody about this so that prevention can occur.
Megan is a beautiful storyteller who is not afraid to say hard things and she does a wonderful job capturing the children who’s stories she tells.
I will be sharing the book with many friends!

[Kristin · Rating 5 out of 5]

As a CMV mom, I feel seen after reading this book. I’m so glad Megan made this book happen and grateful for her zealous work in making CMV known. Women ( and their partners) who are pregnant or thinking about it should read this book. Let’s get the word out there so we can help others like Anna, and my Mighty Max, have a better chance at life.

[Kelly Pramberger · Rating 5 out of 5]

Amazing and very brave story to read! Thank you to NetGalley for the ARc. Five stars! The story is heartbreaking at times but I admire all that Nix does for herself and her family and ultimately the public. It was an inspiration to read.

[Kimber P · Rating 5 out of 5]

As a mother of a congenital CMV child myself, I related to the pain, anger, and desire for change in this book. Megan writes beautiful about the infuriating lack of knowledge about this common virus and how it can harm our babies in utero. Highly recommend this book! CMV needs to be talked about!

[Kristi Moorman · Rating 4 out of 5]

Kind of a lot of statistics but really interesting read with heartfelt moments, times of pain and sheer disappointment in the medical community but also moments of Triumph and happiness.

[Zibby Owens · Rating 5 out of 5]

Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth is a compulsively readable memoir and urgent call to action about a hidden risk to pregnant women: the congenital cytomegalovirus. The author shares the story of discovering her daughter’s microcephaly at thirty-six weeks pregnant while in Sitka, Alaska, where her husband is a salmon fisherman, and the subsequent challenges of raising a baby with CMV. She discusses her advocacy work, the lack of awareness about CMV, and the importance of universal screening for newborns and for affected families.

Wow, what a story. Just living through what the author endured would be enough, but to then also write a book about while she’s at home caring for her daughter, Anna, and learning how to parent a deaf child, but also advocating for CMV awareness is incredible. I learned so much about CMV and how easily it can be transmitted—often from toddlers to their pregnant mothers and then on to the unborn baby. It’s stunning that so many babies have this disease, yet no one has written about it before. The author deserves a presidential medal for her tireless work in trying to raise awareness and push for mandatory universal screening at birth. Remedies for Sorrow is a memoir about the boundless capacity of love, an extraordinary child, and the lifesaving power of truth.

To listen to my interview with the author, go to my podcast at: https://www.momsdonthavetimetoreadboo...

[Kari Zich · Rating 5 out of 5]

This book is extremely well-researched , well-written, eye opening, and poignant. As a woman in the midst of growing my family, I am so grateful the author has made it her mission to break the silence surrounding CMV. I am shocked that I knew nothing about CMV both as a person who has had a child and as a person who has had 7 years of medical training. Her book is powerful and I'm grateful she had the courage to write it and to provide critical information on a topic where our medical system and government are clearly failing us. I feel equipped to implement prevention measures in my life and to advocate for myself as a patient. In my work as a medical provider, this book has been impactful as well. It has made me feel deeply disappointed in our medical system and the amount of self advocacy that is currently tolerated (very little). She describes a concept of narrative medicine and it has changed the way in which I'll approach my patients. Her story serves as a reminder that patients have knowledge and perspectives that should be valued and that a little compassion can go a long way. I will definitely be recommending this book to friends and collegues.

[Tali Nay · Rating 3 out of 5]

This at times was a confusing book for me. Certainly it’s indisputable that CMV should be talked about more and that pregnant women should be educated on it, but coming into the book with what felt like it being billing as THE WORST THING that can happen to a child, it fell a little flat for me. Especially because of how many children with CMV don’t end up even having symptoms. So if I’m comparing it to, say, childhood cancer, it doesn’t seem like the greatest threat out there. I also wanted more description of Anna herself. Aside from the deafness and getting the implants, she’s hardly mentioned, so I didn’t come away with a sense of how else she may be affected. It just seemed like maybe she should have factored in more to the telling of the story. Oddly, the CMV element was not what I liked best about the book…rather it was the author’s overall description of her family’s lives. How they weave in religion, Alaska, and the general growing of a family. She’s a lovely writer and in those parts where she’s simply describing their life, it felt cozy and full.

[Vanessa Olson · Rating 3 out of 5]

As a non-fiction lover, I enjoyed this book even though it was heartbreaking and a little scary.

The Good:
- Megan is an excellent writer. Her style feels natural and pretty effortless. Easy to read.
- Despite the difficult subject matter, Megan is relatable most of the time
- She explains CMV plainly without overly technical medical terms that could confuse things
- I appreciated that she mentioned guidelines for how/why/when to ask to be tested.

The Bad:
- This isn't really her fault, but I found myself frustrated with how lacking Megan's support system was in the early chapters of the book. It seemed to me that help from her husband was scarce because of his seasonal job. Not sure if that's an issue with the writing or actually how it was.
- The author's insistence on staying in Alaska seemed to make things go from bad to worse and she didn't really take responsibility for that.
- The timeline was a little odd near the end of the book.