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.
|Product dimensions:||6.31(w) x 9.32(h) x 1.05(d)|
About 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.
Read an Excerpt
Choosing NaiaA Family's Journey
By Mitchell Zuckoff
Beacon PressCopyright © 2002 Mitchell Zuckoff
All right reserved.
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 hera 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 right up 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.
Excerpted from Choosing Naia by Mitchell Zuckoff Copyright © 2002 by Mitchell Zuckoff
Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Table of ContentsPrologue
"Don't worry, Mom. Everything will be fine."
"If you are going to cry, you cry later. It blinds your eyes."
"I'm just so sick of having to deal with discrimination."
"The miracle you pray for might not be the miracle you receive."
"I'm really sorry to have to tell you this."
"What do people usually do?"
"This child will cause trauma and tragedy from the first breath."
"So, you're just going to go with the abortionist?"
"There's nothing to be sorry about. I'm not sorry."
"I can't remember the last time the baby kicked."
"We don't have more time."
"Hello sweet baby. Hello."
"We had to give her the chance to make it."
"What do the other nine people know that we don't?"
"She's not pink."
"I didn't get my kiss from Naia this morning."
"It's like her birth, when she didn't cry."
"Naia is a miracle just as she is."
"We have the encyclopedia, but we don't have Hamlet."
"You kind of know you can live through it."
"Naia! Come back!"
"Your family is always there for you."
"I think we should talk about it more."
Appendix: Down Syndrome, Birth Defects, and Prenatal Testing Resources
Most Helpful Customer Reviews
Since my son was born with Down syndrome three years ago, this book and the story of the Fairchilds has given me a better perspective, greater strength and help in understanding why things happen as they do. I must echo another reviewer who said that it helps so much to know that you are not alone in what you are feeling and experiencing. This book is a must read for anyone who has a child with special needs, but especially for anyone who has been competitive or a high acheiver who is blessed with having a child with special needs.
When you undertake a "journey" like this it is comforting to know there are others who have gone before you, and felt what you have felt. It's not always easy or possible to talk with others about the emotions surrounding such a choice - it's not an experience many people can relate to. But when you read Greg, Tierney, and Naia's story you will find that you are not alone.
I loved the Boston Globe series about Naia, and I was thrilled to learn there was a book that told the story in even greater depth and detail. 'Choosing Naia' lived up to my high expectations. This is a book that should be read and treasured, not just for what it says about Naia's family but all our families.