Choosing Naia: A Family's Journey

Overview

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.
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Overview

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.
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Editorial Reviews

From the Publisher
Choosing Naia . . . is a refreshing tale in an age in which medical technology encourages us to strive for perfection in ourselves and in our children. It is, of course, a loss to learn that your child won't be perfectly healthy. But, as Choosing Naia makes clear, few of us understand how much we may gain. --Maggie Jones, New York Times Book Review

"Choosing Naia skillfully recounts how the Fairchilds' initial shock and fear for the future of their unborn child gradually morphed into a determination to have the child and help her thrive after birth." --Hartford Courant

"The story of the Fairchilds' emotional and spiritual struggles is gripping-and relevant to everyone who's ever cared for a child. Choosing Naia is a powerful and important book." --Michael Bérubé, author of Life As We Know It: A Father, a Family, and an Exceptional Child

"Choosing Naia is an accurate and courageous book, a chronicle with a joyous outcome. For all readers it will enhance understanding of family building and of human values. I recommend it earnestly." --Dr. Allen Crocker, director, Down Syndrome Program, Children's Hospital, Boston

Publishers Weekly
For a series of Boston Globe articles in 1999, reporter Zuckoff interviewed Greg and Tierney Fairchild, a happily married, interracial professional couple who went for the usual prenatal screenings and came away with some very bad news: the fetus carried a major heart defect that could signal Down syndrome. Zuckoff's compassionate and informative medical cliff-hanger draws on extensive interviews with the Fairchilds, their families, friends and medical practitioners, as well as broad research into the history and science of issues related to the developmentally disabled. The story opens with Tierney's joyous "positive" result on the home pregnancy test. All is going well until, during a routine ultrasound, a doctor declares, "I think we have a problem here." More tests confirm the Down syndrome diagnosis. Up against Connecticut's 24-week deadline for elective abortions, the couple struggles with complicated ethical and practical concerns, since the newborn would have to undergo major open-heart surgery and face lifelong retardation, in addition to other medical problems. In the end, they decide this will simply be one more challenge they'll face together. After Naia's birth, the Fairchilds struggle to keep her alive and fight to strengthen her for heart surgery, while working to develop her social and mental skills to the best of her abilities, which turn out to be great indeed. While Zuckoff's focus stays on the couple, he broadens the usefulness of their story with asides on the history of the treatment of retardation, including the legal and medical issues such cases raise, with endnotes detailing his sources and an appendix listing resources for people needing further guidance. Copyright 2002 Cahners Business Information.
Library Journal
Zuckoff expands upon his award-winning series of newspaper articles of the same name in this book about the heartbreak that arises when modern medicine's astounding ability to identify problems while a baby is still in the womb comes face to face with its inability to do anything about them. The book follows a couple from the time they discover that their child will be born with Down syndrome through their decision to continue the pregnancy and into the baby's first years of life. Zuckoff made a wise decision in choosing the Fairchilds as the subjects of his book. First, they appear to be prochoice, so their eventual decision to continue the pregnancy is more interesting than it might have been if they were staunch prolifers. Second, their mixed-race marriage adds some interesting dynamics to their extended-family interactions. Third, they did not fall into a high-risk factor category for having a child with Down syndrome, and initial screening tests did not suggest a problem. This book will be of interest not only to parents facing a similar decision but also to those interested in the ethical, religious, social, and economic issues surrounding prenatal diagnosis. For most collections. KellyJo Houtz Griffin, Eatonville, WA
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Product Details

  • ISBN-13: 9780807028179
  • Publisher: Beacon
  • Publication date: 9/2/2003
  • Pages: 312
  • Sales rank: 687,385
  • Product dimensions: 6.00 (w) x 9.00 (h) x 0.75 (d)

Meet the Author

Mitchell Zuckoff spent more than a decade as an award-winning writer for the Boston Globe and now teaches journalism at Boston University. He is the coauthor of Judgment Ridge: The True Story Behind the Dartmouth Murders. Zuckoff lives near Boston with his wife, Boston Globe photographer Suzanne Kreiter, and their two daughters.
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Read an Excerpt

Chapter One

"don't worry, mom. everything will be fine"

Mom, did you have a baby shower?"

"No, Tierney. But there was a reason."

Tierney Temple-Fairchild and her mother, Joan Temple, were passing time in Tierney's car, driving northeast on Interstate 84 outside Hartford. It was a late afternoon in early May. The sun was bright, the spring air was warm, and new leaves graced the trees lining the highway. Forsythia bushes were ablaze with yellow blossoms.

Mother and daughter had been talking about work, weather, and nothing terribly important. Then Tierney casually asked about the shower. The question brought to her mother's mind a memory, long buried in the place that stores unsent letters, unpaid debts, and unmade apologies. Joan could see no reason not to share it with her youngest child.

It was forty years ago, Joan began. She was a young married woman, around Tierney's age, pregnant with the first of her three children, Tierney's brother, George. As she neared the end of her pregnancy, one of her closest friends delivered a stillborn child. It came as a devastating shock; the friend had already painted the nursery, assembled a layette, and dreamed the dreams of all happy first-time mothers.

After her friend's loss, Joan told Tierney, she wouldn't allow anyone to throw her a baby shower. She didn't want to celebrate in the wake of her friend's tragedy, and she didn't want to tempt fate by acting immune to such pain. Lightning had struck someone standing next to her, Joan figured, and she wasn't about to wave an umbrella in the air. No one could persuade her otherwise, and Joan had dug in her heels rightup to the moment her water broke. She had so refused to prepare for a baby that Tierney's father had missed the birth of his namesake son. He was out buying a crib.

Tierney listened quietly. Normally she loved hearing family stories. But as Joan spoke, Tierney gripped the steering wheel and kept her eyes trained on the road ahead. When Joan finished, Tierney quickly changed the subject.

Tierney had a secret she was keeping from her mother, and the last thing she wanted to talk about was a stillborn child. That could lead to thoughts about bad omens and a mother's intuition, and no good could come of that. The conversation moved on, and Joan let the memory drop.

What Joan couldn't possibly have known was that next to her on the front seat, tucked safely in Tierney's purse, were the first recorded images of her first grandchild.



One night several weeks earlier, Tierney had been at home with her husband, Greg Fairchild, in the book-filled one-bedroom apartment they shared in a convenient but unlovely part of downtown Hartford. They had just come home from dinner at a nearby restaurant, and they were alone except for their excitable black poodle, Onyx.

Almost on a whim, Tierney decided to break out the last in-home pregnancy test in her medicine cabinet. She had already gone through nearly a dozen, each one a disappointment. Tierney's urine had never revealed a pastel stripe, a red cross, or any other indication that parenthood was in their future. Tierney had equally low expectations for the plastic wand she held in her hand. She suspected that she had ovulated when she was out of town for several days on a business trip, costing them yet another month.

Tierney and Greg had known each other for almost nine years. They had been in love for eight, married for nearly four. A graduate student, Greg was thirty-four. A corporate manager, Tierney was thirty-one. They'd trash-canned their birth control almost a year earlier, feeling ready to start working on their imagined ideal family: three children, two biological and one adopted.

When Tierney hadn't become pregnant during the first few months of trying, both of them had grown anxious but neither felt panicked. Tierney had been on the Pill, and they knew it might take six months or so for her body to readjust its cycles and begin ovulating normally again.

When those six months passed and nothing happened, Tierney sought answers from her obstetrician/gynecologist, Dr. Michael Bourque, whom she had known since she was nineteen. A battery of tests showed that she still wasn't ovulating, so Bourque had started her on a relatively low dose of a fertility medicine called Clomid, a synthetic compound in a class of drugs called antiestrogens. Clomid is a first-line offense against infertility, designed to trigger a woman's body to produce an egg ready for fertilization.

Bourque had told Tierney not to worry, but it wasn't easy as more months came and went. She and Greg began wondering if they'd ever be able to conceive. They started thinking about costly and invasive fertility procedures. They discussed whether a sperm or egg donor might be necessary, or whether they might have to adjust their family plans altogether and go straight to adoption.

By spring, Tierney had reached what Bourque said was the highest dosage he would prescribe of Clomid before sending her to a fertility specialist. He knew that among patients treated with Clomid, 95 percent who become pregnant do so within the first six months of taking the drug.

As part of her treatment, Tierney was monitoring her body temperature every day, charting the peaks and valleys that indicate ovulation--the magic formula is a sudden dip, followed by a three-day rise of at least two-tenths of a degree over the highest temperature recorded during the previous six days. One sign that ovulation has been answered by conception is the woman's temperature doesn't drop back down after the three-day rise. Tierney doubted it meant anything, but that's what seemed to be happening the April night she took out her last e.p.t.-brand home pregnancy test.

Tierney went into the bathroom and shut the door. Watching her from the wall was a black-and-white photo of jazz trumpeter Dizzy Gillespie, his eyes closed and his cheeks pregnant with air. She followed the instructions-- allowing the wand's absorbent tip to sop up some of her urine. She left the test kit on the counter for the two-minute lifetime it would take to show positive or join its predecessors in the garbage.

Though she had been through this drill too many times before, Tierney was nervous about returning to the bathroom. She paced around the apartment while Greg stayed in the living room, keeping his hopes and his head down. He sat quietly, reading in a high-backed burgundy wing chair. On a nearby glass-front china cabinet sat Greg's bronzed baby shoes, alongside a sepia- toned photo of him as an adorable, smiling baby. When she was certain enough time had elapsed, Tierney waited a little longer. She steeled herself and returned to the bathroom.

And there it was, staring up at her from the tiny round indicator window: a bold pink stripe. She had never seen one before, except in the picture on the package. "Oh my God, that's what it looks like when you're pregnant," she said, bounding from the bathroom. She ran to Greg and jumped on his lap, her cheeks flushed with joy. The moment had finally arrived: a first pregnancy for both.

They basked in the news. They kissed, they smiled, they touched each other's faces. Still, they remained cautious about the possibility of a false- positive reading from the over-the-counter test. It would be awful to announce that they were pregnant only to withdraw the news afterward. They agreed not to tell anyone until Tierney could make an appointment with Bourque for confirmation.

That visit took place April 15. A blood test, an ultrasound, and a physical examination confirmed the in-home test results. Tierney was indeed pregnant. Even Bourque was excited, circling the positive results on Tierney's patient record and adding two huge exclamation points. And he added a bonus: the due date was December 7, Greg's birthday. The ob/gyn also gave Greg and Tierney tangible proof of impending parenthood: black-and-white ultrasound images the size of baseball cards.

To the untrained eye, the pictures had all the clarity of Rorschach's inkblots. Was that a leg? A lung? Tierney's placenta? Bourque assured them he could see a healthy-looking, eight-week embryo taking the developmental leap to becoming a fetus.

It was about an inch-and-a-half long. Fingers and toes were becoming clearly defined. Organs were starting to work. Spontaneous movements were beginning. Taste buds were starting to form. Tierney and Greg studied the images and tried to convince themselves they could see what Bourque did, but for the most part they had to take the doctor's word for it.

Thrilled as he was to have the pictures, Greg maintained a certain detachment. "It's like looking through an aquarium glass. You can't touch fish, even though they really are there," he said later. "You can't pick them up and you can't hold them and you can't play with them. You can't do all these things with babies when they're in utero. It's still a photo on an electric screen. When there's someone there who's crying, moving around, with needs, I think that creates a much different response."

Still, the grainy images were confirmation enough for Greg to phone his parents, Bob and Mary Fairchild, at their home in a small central Virginia town called Rustburg. Long eager to become grandparents, but unaware that Greg and Tierney had been trying to fulfill that dream, the news caught Bob and Mary by surprise. Bob expressed quiet congratulations. Mary let out an ear-piercing scream. They hung up after promising not to tell anyone. That was a treat Tierney and Greg wanted for themselves.

Tierney specifically hoped to contain word of her pregnancy for another few
weeks, until mid-May, so she could tell Joan on Mother's Day.

But then came the car trip.



Tierney and Joan were in Tierney's midnight blue Honda Accord, en route to Marlborough, Massachusetts, a gritty little city halfway between Boston and Worcester. Their destination was Marlborough High School, to attend a symphony concert featuring Joan's older daughter, Tara.

Tara was thirty-two, a year older than Tierney. She was single, living in Worcester, a veterinarian by profession and a violinist by avocation. If they tried, the two sisters could pass for twins, a fact that pleased them both. Growing up, they were both good girls, "A" students, pretty, well-mannered, and polite. As children, they shared a love for koalas, and they had even invented their own imaginary koala language. Their bond had held strong over the years. In their teens, they had clung to each other through their parents' divorce; they had remained close as adults by regularly making the hour-long trip between their homes and by talking frequently on the phone. Tara was the only person to whom Tierney had confided her difficulties trying to conceive.

When Tierney saw Tara before the concert, she knew she couldn't wait any longer.

"I have something to tell you. It's a secret," Tierney blurted out. They hurried off together to a bathroom. Tierney pulled out the ultrasound pictures.

"I'm pregnant!" she said.

The sisters hugged and cried and struggled to pull themselves together. Tierney didn't want to spoil her Mother's Day present to Joan. They composed themselves and left the high school bathroom like teenagers who had just snuck a cigarette, though they never would have dared such defiance as girls. They emerged straight-faced and bright-eyed. Their stealth worked, but it didn't last.

After the concert, they drove to Tara's apartment. Standing in the street, getting ready to say goodbye, Tierney decided she could wait no more--she wanted Tara to share their mother's joy. Impulsively, she pulled out the ultrasound photos. But night had fallen and it was too dark to see. So Tierney, Tara, and Joan moved into the glare of the Honda's headlights. They huddled together, their heads just inches apart.

"That's my baby!" Tierney said. Joan cried for joy. Mother and daughters hugged.

On their drive back to Hartford, Tierney told Joan about the months of fertility problems, the in-home tests, everything that happened on the long road to pregnancy. Joan listened quietly, feeling guilty the whole time. She told Tierney she wished she hadn't chosen that very afternoon to tell the story about her friend's stillbirth.

"I'm so sorry," Joan said.

"Don't worry, Mom," Tierney said. "Everything will be fine."



In the weeks that followed, everything had indeed gone well. As she approached the halfway mark to nine months, Tierney had no complaints beyond her inability to fit into her favorite clothes: a bulge was developing nicely on her normally flat stomach. She suffered through only one day of morning sickness, and that was only because she was so busy with work that she had forgotten to eat.

Although Connecticut was sweltering through one of the hottest springs on record, Tierney continued jogging to stay in something vaguely resembling her usual shape. She ran a route that took her from their apartment building on Imlay Street through their Asylum Hill neighborhood, past the Taco Bell, the halfway houses, and the little ethnic markets located hard against Interstate 84. She also maintained a rigorous weight-training program at her gym, and it looked as though she would be the first person to stick with the regimen long enough to be used in the data the gym trainer was collecting for a Ph.D. dissertation.

All the medical indicators had been equally good. In June, as a routine follow- up to the April ultrasound test, Tierney underwent a prenatal examination called a triple screen. The test, usually performed between the fifteenth and eighteenth weeks of pregnancy, is used to check the likelihood of several kinds of major birth defects, including neural tube and ventral wall defects, in which a fetus has an abnormal opening of the spine or abdominal wall. It's also used to screen for Down syndrome, the most common of all chromosomal abnormalities, a condition marked by mental retardation and signature facial features and often accompanied by various health problems.

Introduced in 1988, the triple screen checks a sample of a pregnant woman's blood for the levels of three substances: alpha-fetoprotein (AFP), estriol, and human chorionic gonadotropin (hCG). AFP is a protein produced in the yolk sac of a pregnant woman and also by the liver of her fetus. Estriol and hCG are hormones produced by the placenta. The e.p.t. pregnancy test that Tierney had used was designed to detect hCG in urine--its presence at certain levels is a sure sign of pregnancy. In fact, hCG was the substance used in the old "rabbit tests." Doctors in the 1920s discovered that rabbits injected with urine rich in hCG--the urine of pregnant women, that is--would undergo distinct changes to their ovaries. Doctors would kill the rabbits to see if those changes had taken place. Although the rabbit died regardless of whether a woman was pregnant, the phrase "The rabbit died!" became mistakenly synonymous with a positive result.

The triple screen, then, is a sophisticated rabbit test. Scientists discovered that elevated or lowered levels of the three substances at specific points in a pregnancy can suggest a host of potential problems. Proper levels suggest the absence of those problems--in other words, a healthy child. For instance, a high level of AFP at certain times suggests a greater likelihood of a neural tube defect such as spina bifida, a physical deformity that results from the failure of the spine to close properly during the first month of pregnancy. Lower-than-expected levels of AFP and estriol, combined with higher-than- expected levels of hCG, can mean Down syndrome.

There's little dispute about the value of the triple screen, but it's far from perfect. By their very nature, so-called screening tests such as the triple screen and ultrasound provide good indications of what's happening inside a womb, but no definitive answers. It's as though they hear thunder and automatically predict rain: the two usually go together, but not always. Screening tests are known for false negatives, where bad news masquerades as good. For instance, the triple screen only picks up about 60 percent to 70 percent of instances of Down syndrome.

Despite the test's less-than-perfect record, Bourque saw no reason for concern. Using a formula that combines the levels of AFP, estriol, and hCG with mathematical values for Tierney's age, weight, race, and family history, he concluded with great confidence that the odds of Tierney having a child with Down syndrome or a neural tube defect were extremely low.

The chance of Down syndrome was particularly small. Stamped across the bottom of the one-page report tucked into Tierney's medical file were two words: SCREEN NEGATIVE. It was only below that, in tiny print, that a disclaimer read: "It should be noted that normal test results can never guarantee the birth of a normal baby, and that 2 to 3 percent of newborns have some type of physical and mental defect, many of which are undetectable through any known prenatal diagnostic technique." Tierney didn't see the disclaimer, but she wouldn't have worried about it, anyway.

Instead, she and Greg focused on the big picture: SCREEN NEGATIVE. That result, combined with the first ultrasound performed on Tierney in April, meant Bourque had no reason to order more costly, complicated--and more definitive--diagnostic tests. A "Prenatal Diagnosis Screening" form Tierney had filled out also bolstered Bourque's confidence. Of twenty-two questions about her and Greg's personal and family medical histories--everything from hereditary chromosomal abnormalities and hemophilia to muscular dystrophy and sexually transmitted diseases--Tierney had answered "no" to every question but one. She wrote that she had an uncle with a birth defect, but she didn't elaborate. It didn't seem necessary, and Bourque didn't consider it significant enough to ask about it.



Tierney was a smart young woman with an impressive resume, on course for a successful future. She had an undergraduate degree from the University of Pennsylvania, a master's in business administration from the Darden Graduate School of Business Administration at the University of Virginia, and a Ph.D. in education from UVA as well. In 1994, she had been hired to manage education programs for United Technologies Corporation, a huge Hartford-based aerospace and industrial company.

Tierney was five-foot-six, slim and pretty, with large brown eyes, silky, shoulder-length brown hair, and a scrubbed peach complexion. She had her mother's voice, a teacher's voice, sweet in the lower registers and prone to cracking when she got excited and it soared by an octave. She was a hard worker--an overachiever since early childhood, her mother had always said-- focused and organized, with a storehouse of energy that allowed her to work or play for long hours with little sleep. She had ready access to her emotions but usually displayed a professional exterior, steely at times. She had a wary side, and she would furrow her brow and narrow her eyes as she worked to understand a point and gain insight into the person making it. When she felt comfortable, she shared an effervescent laugh and a mischievous sense of fun. She had a gleaming white smile, and she was proud of it.

On a Wednesday night in late July when Greg was in Manhattan, Tierney sat alone on their uncomfortable living room couch. It was a fancy, Duncan Fife- style sofa that Greg's mother had reupholstered in green-and-gold brocade. Above Tierney on a high shelf was a photo from their wedding. It showed a handsome black groom in black tie, dancing with a beautiful white bride wearing her mother's white dress. The apartment windows were open, but it was little help. The temperature had topped ninety degrees during the day, and the night air was thick with humidity, a combination that was no friend to a pregnant woman. Trying to get comfortable, Tierney kicked off her shoes and put her feet up on the sofa.

All around her were applications from educators hoping to win grants from United Technologies. Part of Tierney's job was to make grant recommendations, and she was eager to finish reviewing the applications so she could start going over her department's budget for the next fiscal year. She always drove herself at work, but she felt even more pressed than usual. In two days, she and Greg were scheduled to head off on a weeklong vacation at a rented cottage on Martha's Vineyard. It would be their last vacation before the baby came, and she didn't want anything hanging over her head.

Feeling stressed by the work before her, Tierney began chewing absently on a paper clip. She bit down, hard, and felt the sickening crack of enamel: she had dented her smile.

Maybe it was the special care she took of her teeth, maybe it was the hormones of pregnancy, or maybe it was the anxiety of wanting to clear her plate before vacation. Maybe it was a combination of all those things. Whatever it was, the chipped tooth reduced her to tears. It seemed the worst possible thing that could happen, at the worst possible time. She called Greg.

"I really don't need this now," she told him. "I have to go away on vacation, I have to finish all this stuff, and this is the last thing I need." She made the same call to her mother. Joan and Greg echoed each other's assurances. Tierney, they said, it's no big deal. Your dentist will make your tooth as good as new.

Indeed, he would. But it would be a while before Tierney would need her smile again.
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Table of Contents

Prologue




Part I

1.
"Don't worry, Mom. Everything will be fine."

2.
"If you are going to cry, you cry later. It blinds your eyes."

3.
"I'm just so sick of having to deal with discrimination."

4.
"The miracle you pray for might not be the miracle you receive."

5.
"I'm really sorry to have to tell you this."

6.
"What do people usually do?"

7.
"This child will cause trauma and tragedy from the first breath."

8.
"So, you're just going to go with the abortionist?"

9.
"No problem."

10.

"There's nothing to be sorry about. I'm not sorry."

PART II

11.


"I can't remember the last time the baby kicked."

12:


"We don't have more time."

13:


"Hello sweet baby. Hello."

14:


"We had to give her the chance to make it."

15:


"What do the other nine people know that we don't?"

16:


"She's not pink."

17:


"I didn't get my kiss from Naia this morning."

18:


"It's like her birth, when she didn't cry."

19:


"Naia is a miracle just as she is."

20:


"DA-DA!"

PART III

21:


"We have the encyclopedia, but we don't have Hamlet."

22:


"You kind of know you can live through it."

23:


"Naia! Come back!"

24:


"Your family is always there for you."

25:


"I think we should talk about it more."


Appendix: Down Syndrome, Birth Defects, and Prenatal Testing Resources

Author's Note

Sources

Selected Bibliography

Acknowledgments
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  • Anonymous

    Posted June 6, 2003

    A recently graduated Early Childhood Education sudent

    Choosing Naia was reccomended to me by one of my college professors. I LOVE 'true story' books, so this book immeadiately appealed to me. Throughout the entire book, there were times when I wanted to laugh, cry, or where I was just in awe. This is one of the most incredible books I have ever read, and anyone who has children in their life will thuroughly enjoy reading it.

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