Choosing Naia: A Family's Journey

by Mitchell Zuckoff

A dramatic and carefully detailed account of one family's journey through the maze of genetic counseling, medical technology, and disability rights; destined to become required reading for anyone touched by any of these issues.

Genres: Nonfiction, Memoir, Disability, Medical, Biography Memoir, Parenting, Biography

312 pages, Paperback

First published January 1, 2002

About the author

Mitchell Zuckoff is a professor of journalism at Boston University. He is the author of the New York Times bestsellers "Fall and Rise," "13 Hours," "Lost in Shangri-La," and "Frozen in Time." His previous books are: "Robert Altman: The Oral Biography," one of Amazon.com's "Best Books of 2009"; "Ponzi's Scheme," and "Choosing Naia." He is co-author of "Judgment Ridge," which was a finalist for the Edgar Award.

Zuckoff's magazine work has appeared in The New Yorker, Fortune, and other national and regional publications. He is a former special projects reporter for The Boston Globe, where he was a Pulitzer Prize finalist for investigative reporting as a member of the Spotlight Team. He received the Distinguished Writing Award from the American Society of Newspaper Editors, the Livingston Award for International Reporting, the Heywood Broun Award, and the Associated Press Managing Editors' Public Service Award, among other national honors. He lives outside Boston.

Reviews

[Chrissy · Rating 2 out of 5]

I chose this book because it was about a family and their journey to have a child with Down syndrome AND because they were treated right here in Hartford, so I actually know and have worked with nearly every doctor in the book. Basically, the book is about their decision to abort or not to abort, and it boils down to "if only we knew just HOW retarded she would be... if she'll be on the low IQ range, we'll keep her; if she'll be severely retarded, we'll abort". This is NOT what I was expecting from the book (you know from the beginning they keep her, so I figured it would be more like they realized the innate value of a child, regardless of her abilities). Still, the redeeming value of the book was that it taught me the inner workings of the minds of people who think very differently than I do, and that in this day and age (she was born in '99 perhaps), well educated people still have no concept of what Down syndrome is like.

[Corinne Edwards · Rating 4 out of 5]

This is an important book. I don't think my consciousness ever fully grasped the concept that people actually decide to abort their children when they find out that they have (or COULD have) a condition like Down Syndrome. It was amazing to follow this husband and wife as they worked out their feelings about being parents to a child who would not develop and live the way they'd imagined and dreamed. Heartbreaking at times, Zuckoff does a nice job of mixing the story of this family with facts and background regarding the education of children with special needs, research and other families stories. If you have a child with Down Syndrome (or are going to) you should read this. If you have an interest in the field of special education, you should read it. If you have a neighbor or loved one who cares for someone with Down Syndrome, read it too.

[Sherry · Rating 3 out of 5]

My Godmother gave me this book to read. I really liked it but I don't think the mulitracial issue should have been such a big deal. It think it still would have been a good book without making this such an issue.

[April · Rating 4 out of 5]

I read this book because my cousin has a child with Down Syndrome. I admired her and her husbands decision to carry this baby full-term. They are Christian and have a very strict view on the sanctity of life. That being said, it was good to read another family's story on the subject.

The couple in the book were very conflicted in their beliefs. They really wanted to do what was right for their baby. The idea of their child suffering in the womb or later when it was born really affected them. They were back and forth a lot in their decision. They ultimately decide to have Naia, but the story only begins there. There is a lot to discover and learn about raising a child with a disability. I would recommend this to anyone who is pregnant, or wants to be pregnant. I also would recommend it to anyone interested in genetics and the miracle of creating a life.

[Elizabeth · Rating 4 out of 5]

So far, this book had really delved deeply into the issues surrounding downs syndrome and many other factors in one expectant couple's lives, including interracial marriage, discrimination, abortion, faith, and more. It digs deeply, also giving factual information on how downs happens and history of our knowledge of downs (quite fascinating and horrifying). My only criticism of the book is its overly detailed writing style. However, the reader is certainly drawn into the characters' lives.

[Trish · Rating 5 out of 5]

True story about a family that finds out that their unborn child has Down Syndrome and their emotional process in deciding what to do. Speaks to the ethical decisions we face because of medical advances.

[Tiffany · Rating 5 out of 5]

Interesting and fact-rich book full of the ethical and moral choices involved in finding out you are carrying a child with chromosomal differences. Powerful message and informative- even for those who haven't had to make that choice.

[Linda · Rating 5 out of 5]

A sensitive and moving account of the challenges faced in the decision-making process and raising of a disabled child.

[Patricia · Rating 4 out of 5]

Really loved reading this book. An emotional journey of a couple's decision to continue their pregnancy with a child with down syndrome and a severe heart defect.

[Catherine · Rating 3 out of 5]

This is an unusual book among books about parents of babies with Down syndrome because it is very personal but it isn’t a memoir. It’s written by an investigative journalist who details the agonizing decision of a pregnant woman and her husband as they decide whether or not to abort their baby who is diagnosed prenatally with DS and a life-threatening heart defect. What used to be up to God or Fate—having a baby with problems—is now a matter of personal choice. Even not making use of prenatal diagnostic technology is, in our society, a choice to take the risk of having an unhealthy baby.

Because the author tries not to give any of his own interpretation or opinions of the choices the different parents in the book make, it was a little dry. It would be so much more interesting to meditate on all the implications for parenting that this choice to have a special needs baby has on the parents (vs some of the old ways of seeing having such a baby—as either a punishment for something bad or just accepting it as the will of God). I suspect the choice puts a lot of pressure on the parents, especially ones who face a lot of opposition to having the baby, and that might affect the way they see their child. The author only briefly touches on the societal implications of eugenic abortions, and that also is a huge issue that deserves more discussion. He seemed unwilling to ask if the situation the parents found themselves in was good for anyone involved, and it was very telling that on their second pregnancy the parents in the story opted out of all prenatal testing!

[Breanna Faish · Rating 3 out of 5]

I read this for a class so was not super inclined to read it, which could have biased or jaded my opinions of this throughout. I liked the story but was not super invested in reading the physical book the entire time if that makes sense.

[Kris · Rating 5 out of 5]

Beautiful book of a beautiful child.
people who don't accept these children don't know what they miss!

[Mary · Rating 3 out of 5]

I picked up Choosing Naia while at the library searching for books for the Adoption Reading Challenge. Choosing Naia is a very detailed account of a family's choice to continue their pregnancy with a child prenatally diagnosed with Down Syndrome. The book is written by Mitchell Zuckoff, a Boston Globe reporter. Because of that, I think it is a bit more difficult to read. In addition to telling Naia's family story, the book includes significant information about the history of Down Syndrome and cumbersome medical knowledge. It is definitely not a light read.

I found it surprising that most parents of individuals with Down Syndrome do not have a prenatal diagnosis and are surprised at the child's birth.

What advocates of Down Syndrome may find difficult is that Naia's parents seriously considered terminating the pregnancy. The book also includes stories of families who did choose to terminate. While difficult to read, I felt that it was necessary as the story would not be so raw and honest without those testimonies. The book also shows the successes of many individuals with DS and the parents who chose to continue their pregnancies and raise their children.

While this is not an adoption book per se, I have been doing some heavy research on adoption of children with Down Syndrome. This book allowed me to broaden my perspective of DS.

[Elana · Rating 4 out of 5]

I loved this journey that is documented in this book. Excellent writing. I learned more about Down Syndrome and could relate a little since my little grand-daughter, Grace, has this syndrome. I loved the advice the couple received from a religious leader, "The miracle you pray for may not be the miracle you receive." That is exactly what happened with Grace. This is an informative and interesting book.

[Meghan · Rating 3 out of 5]

This book was a choice of several for me to read and then write a paper on for a "Disabilities in the Media" class in college. The book is split into two alternating parts, the private turmoil a couple faces after the discover their unborn child has Down Syndrom, and more technical/clinical sections that discuss the medical and social ramifications of raising a child who has Down Syndrome.

[Rebekah · Rating 3 out of 5]

This was an interesting read about the struggle of a couple to decide whether or not to continue a pregnancy, knowing that the child has Down Syndrome. I enjoyed the story aspect much more than the technical aspect, which I skimmed over for the most part. Gotta admit that I loved the happy ending!

[Peggy Jeffcoat · Rating 4 out of 5]

This is a true account of one family's decision to continue with the pregnancy after they discover that the child will have Down Syndrome. I learned a lot about Down Syndrome and was happy to be enlightened on the subject. The author followed the family almost from the beginning of the diagnosis thru about 3 years of age.

[Janine · Rating 4 out of 5]

I've read many memoirs of people who have a family member with a disability. This one was interesting because it was told by a third party, alternating between the story of the family and a factual account of the medical and early childhood educational aspects of the situation. At times there was too much detail, but overall a good read.

[Bri · Rating 3 out of 5]

This book was very informative about Down Syndrome. If you are an educator, I would recommend it to you. It helped me understand more of the journey parents go through and the important decisions they make along the way.

[Aurora · Rating 4 out of 5]

Wonderful book about a family choosing to give birth to their baby with Down syndrome.

[Sydonyia Crossman · Rating 4 out of 5]

This is a tough read in some spots but absolutely recommend this book. Very well written

[Nadia · Rating 4 out of 5]

A really good book for anyone thinking about entering in the field of genetic counseling, genetics, or parenthood.