2000: Mitchell Zuckoff, The Boston Globe
5/31/2000
ASNE Staff
Award for Nondeadline Writing
Wednesday, May 31, 2000
by: ASNE Staff

Section: Nondeadline writing


Mitchell Zuckoff

Articles

Choosing Naia -- A family's Journey

A hole in the heart
December 5, 1999

Reaching a decision
December 6, 1999

A difficult birth
December 7, 1999

Struggling to grow
December 8, 1999

Mending a heart
December 9, 1999

Life with Naia
December 10, 1999

Article list

Choosing Naia -- A family's Journey

A hole in the heart

December 5, 1999

First of six parts

Tierney looks radiant in a new black-and-white striped dress, smiling and chatting as she pulls it up to expose a gentle bulge in her normally flat stomach.

She lies on a table in a fourth-floor obstetrics room at St. Francis Hospital in Hartford. Her husband, Greg, sits in a chair beside her, watching as a technician begins the routine ultrasound test that is their last task before a weeklong vacation on Martha's Vineyard.

The technician, Maryann Kolano, strokes Tierney's belly with a sonogram wand, using sound waves to create a picture of the life inside. Greg studies the video screen, fascinated by the details emerging from what looks like a half-developed Polaroid. An arm here, a leg there, a tiny face in profile. Then the internal organs: brain, liver, kidneys.

"I'm having a hard time seeing the heart. Maybe the baby's turned," Kolano says calmly. Then it appears, pumping in a confident rhythm. She stops the moving image, capturing a vivid cross-section, and Greg remembers his high school biology.

"All mammals have four chambers in the heart," Greg thinks to himself. "There are only three chambers there."

"You know," Kolano says tactfully, "I'm not as good at this as some other people. Maybe somebody else should take a look." She tries to mask her alarm as she leaves the room.

The inescapable truth is staring at Tierney and Greg from the silent screen: There is no fourth chamber. There is a hole in the heart. And not just any hole, they will soon learn. It is a tell-tale sign of Down syndrome, a genetic stew of physical defects and mental retardation.

A hole in th heart. In their baby's and, suddenly, in their own.

The date is July 24, 1998, and Tierney Temple-Fairchild and Greg Fairchild have just entered a world of technological wizardry and emotional uncertainty called "prenatal screening." It is a confusing place where even the name is misleading; abortion screening is more accurate.

Most disorders tested for today -- including Down syndrome, muscular dystrophy, and cystic fibrosis -- cannot be corrected. That means the most common question prompted by distressing prenatal test results is not, "How can we fix it?" It is: "Should this pregnancy continue?"

Those questions are growing rapidly for countless couples who, like Tierney and Greg, would consider abortion under certain circumstances. Researchers say they are within two years of deciphering the blueprint of human development -- the genetic code that acts as the operating instructions for creating life. That achievement is expected to drive prenatal screening into the realm of science fiction. Then what? Does a woman carry to term a baby susceptible to mental illness? Cancer? Obesity? Infertility?

Already, hard science has far outpaced the emotional side of the equation. People can learn a great deal about their unborn children, but no one tells them how to handle that knowledge, or what the future might hold.

That void will be filled in days ahead by the competing and sometimes ill-informed voices of Tierney and Greg's family and friends. Some will urge abortion -- the choice made by up to 90 percent of people in their situation -- while others will be horrified by the idea.

Complicating matters will be pressures of race, faith, and timing -- less than two weeks after the final diagnosis, Tierney's pregnancy will reach the stage where abortion is illegal except to protect her life or health, neither of which is at risk.

All that makes theirs a journey through uncharted terrain, filled with fears and tears. Tierney and Greg will be tested and torn, changing their minds repeatedly as they confront a new reality amid the ache of lost dreams.

The morning of the ultrasound test dawned with a cloudless pastel sky, custom-made for a couple on course for an enviable future.

Tierney is 31, as smart as she is attractive, with shoulder-length brown hair, large expressive eyes, and an effervescent laugh. She has a doctorate in education from the University of Virginia, where she also received an MBA. Four years out of school, she works in the corporate contributions department of United Technologies, managing education programs.

Greg is 34, model-handsome, with thick shoulders, a strong chin, and a penetrating intellect. He also received an MBA from the University of Virginia, and is now writing his dissertation for a doctorate in business from Columbia University in New York, where he spends several days each week. The dissertation topic: small business in the inner city.

Together for nine years, married for four, Greg and Tierney live with their poodle, Onyx, in a one-bedroom apartment in a pleasant but unfashionable section of Hartford. Greg's bronzed baby shoes and a sepia-toned photo of him as an infant greet visitors from atop a china cabinet near the front door. They have long dreamed of having at least two children and adopting another.

It has been a busy time in their lives, but Tierney's first pregnancy has gone smoothly after some initial difficulty conceiving. Five months have passed with no morning sickness and enough energy for plenty of jogging through the streets of their neighborhood.

A first ultrasound, in late April, showed a healthy fetus due around Dec. 7, Greg's birthday. A second prenatal test for birth defects, called a triple screen, also was negative. In fact, it showed the odds of Tierney having a child with Down syndrome were unusually low, though the test is accurate only about 60 percent of the time. Still, they had no worries about today's ultrasound, scheduled mainly to confirm the due date.

Tierney left home early for a half day of work. Planning to go straight from the hospital to Martha's Vineyard, Greg loaded their Honda Accord, filling the trunk with bags, books, and a cooler with $100 worth of meat, fish, and a homemade marinade.

Greg picked up Tierney at work at 1:15 p.m. and they drove to nearby St. Francis Hospital. As they walked in, Tierney cheerily mused that their next visit would be for the delivery. It seemed fitting and natural: She was born here, too.

But now, an hour after their arrival, Kolano, the technician, has left them alone in ultrasound Room 1. Budding concerns are pushed aside, muted by Kolano's comment that she lacks the skill to properly read the results. Tierney's main worry is that they might miss their 8:30 p.m. ferry reservation.

But then Kolano returns with her boss: Dr. James F.X. Egan, director of maternal/fetal medicine, a vision of authority with silver hair, red cheeks, and blue eyes behind tortoise-shell bifocals.

Egan glances at the screen on the Ultramark 9 ultrasound machine and drops the first shoe: "We're only locating three chambers," he says in a voice that reveals only information, not emotion. He asks them to move two doors down, to Room 3, where he can use a more advanced machine, the Ultramark 5000.

As they begin the move, Tierney starts to cry. Greg takes her hand and says softly, "Stay calm. It's going to be OK. There's not anything to worry about yet."

But the Ultramark 5000 confirms the initial diagnosis in bold color: Their unborn child has a hole between the top and bottom chambers of the heart, a condition that causes a shortage of the oxygenated blood that every cell needs to survive. Also, the heart is situated at a slightly off-kilter angle.

Their baby is fine in the womb, Egan says, because Tierney is providing all the oxygen it needs. But these flaws will require major surgery before their baby's first birthday.

"I'm sorry," Tierney whispers to Greg between rising sobs. "I'm really sorry." She knows it's not her fault, yet she feels guilty. Gently, Greg tells her, "You don't have anything to apologize about."

But "sorry" is more than an apology. Tierney wants to tell Greg she feels sorry for him, sorry for herself, sorry that they won't be having the healthy child they dreamed about. Again, he tells her not to worry.

Then Egan drops the other shoe. This kind of heart defect is associated with Down syndrome, he says. If they want a diagnosis, he could perform a more accurate prenatal test, amniocentesis.

Egan explains he will insert a needle into Tierney's uterus and withdraw a small amount of fluid. Because the fluid contains cells from the fetus, doctors can diagnose Down syndrome with near-certainty by analyzing the chromosomes in the fetal cells. Most people have 46 chromosomes per cell; people with Down syndrome usually have 47. Results take a week to 10 days.

Tierney wants to call her mother. Greg discourages her, saying it would only upset them both, and they still don't know what they're dealing with.

"I feel so bad for you guys," says Kolano, the technician. "This is so tough, but it's better that you find out now."

Greg and Tierney, still trying to absorb the news, wonder what she means and why she seems so flustered. Then Egan offers his sympathy, too, while asking Tierney to sign a release form acknowledging there is a risk of miscarriage from amniocentesis.

Tierney feels rushed and confused -- wasn't it just an hour ago everything was wonderful? -- but through her tears she signs the form. Her body shakes as Egan inserts the needle. She cries in fear her baby will be jabbed. But the Ultramark 5000 is still on, and they watch the needle pass harmlessly into the uterus and then back out. Greg helps her off the table.

Afterward, there is a brief discussion between Kolano and Egan about whether to administer another, quicker test, called fluorescence in situ hybridization, or the FISH test. But Egan decides they won't; it's not accurate enough.

Tierney doesn't catch the remark, but Greg does. "You can't cure Down syndrome, so he has to mean just one thing," Greg thinks. "He must mean accurate enough to decide about abortion."

Despite Egan's misgivings, Tierney and Greg decide they want the FISH test, using part of the sample taken for the amniocentesis.

Insurance forms are signed and Kolano shows them the back way out, so they can avoid the waiting room. "That makes sense," Tierney says to herself. "If we went that way, people would look at us and think, `Wow, they just got some really bad news about their baby.' "

They drive home in a fog, punctuated by Tierney's sobs. Greg carries in the cooler; they won't be going to the Vineyard tonight.

For the moment, Tierney focuses on the risk of miscarriage. She lies on the couch, asking, "What does this all mean?" Greg tries to be strong, telling her they'll play whatever cards they're dealt.

They make their first call, to Greg's parents in rural Russburg, Va. "We're really sorry for you both," says Mary Fairchild, whose college major was special education.

She talks of faith and holds back the tears she wants to shed for her first grandchild. "You have to face the situation," she explains. "If you are going to cry, you cry later. It blinds your eyes." Greg's father Bob, a retired Army colonel and bank executive, listens intently but says little.

The next call is to Tierney's mother, Joan Temple, a substitute teacher who lives in Avon, Conn. A devout Catholic, Joan tells them, "You need to relax and not think the worst. Remember, it's God's plan." Privately, she will be praying that a miracle heals her first grandchild. Tierney's parents are divorced. Her father, Ernie Temple, won't be told for another 11 days.

The last call is to a genetic counselor, Alicia Craffey, who was referred to them by Egan.  She promises to assemble a package of information, books with titles like, "A Time To Decide, A Time To Heal."

They pick at some dinner, listlessly watch TV, talk for hours about everything and nothing, then fall into fitful sleep. Overnight, the ice in the cooler melts. The food left abandoned inside turns rancid.
In the morning, Greg awakens in a dark mood. It is the first of many back-and-forth flips both will make in the days ahead.

He calls his parents again and unleashes a fury of thoughts on being black, on the mentally retarded, and on discrimination against both groups. He knew there would be problems for their child, born to a white mother and a black father. Now, imagining the added hurdles of a heart defect and Down syndrome, he pours out a litany of fears and frustrations.

"I'm just so sick of having to deal with discrimination," he says. "Why couldn't this have been visited on someone who believes discrimination is not a part of life? Why couldn't this have happened to someone who has lived the most privileged life of all?"

He remembers, as a child, watching other boys taunt a mentally retarded girl, asking her to pull down her pants and laughing when she did. He remembers her brother chasing the boys, and now he imagines himself in that role.

He tells his parents he remembers volunteering as a teenager for Special Olympics. He was supposed to hug runners as they crossed the finish line. "I remember my own visceral reaction when you see a child with what I would call extreme Down syndrome -- very large glasses, bulging eyes, tongue sticking out of the mouth. I didn't pull away, but you don't feel as comfortable reaching over and hugging. Clearly, after you do it, after you hug the first five, you find out, hey, there's nothing wrong." Still, his initial response makes him wince.

To himself, he thinks, "When I have people over to my house and we have dinner parties, what will happen the moment when the child comes out and the people won't know what to say and do?" He knows he isn't being completely rational, and he will scold himself later, but now the world is spinning and so is he.

After the phone call with his parents, Greg tells Tierney they face a frustrating future in which they can never stop being vigilant, educating the ignorant, battling the cruel.

"If we have this baby, just get ready for the onslaught of stupid, maybe well-meaning, but stupid comments. We're going to have to deal with them for the rest of our lives," he tells her. "Tierney, we're going to have to go into our child's school, fighting with administrators, changing this and that. I'm going to have to make sure people aren't abusing my child, putting him in the back of the room or locking him in the closet. This is what we're going to have to do. But I'm mad about it."

He is leaning toward abortion.

But Tierney has awakened more peacefully. For the moment, her confusion and sadness have passed with the night. She tells Greg: "We both consider ourselves to be pretty strong people. If this is going to be a worst-case scenario, then maybe we're the right parents to take this on." She also reminds him they still don't have a final diagnosis -- either about the heart defect or Down syndrome -- so they should just wait and see.

Tierney leaves to get the information assembled by Craffey, the genetic counselor. Then they read it together, huddled on their living room couch.

They learn that no one knows why Down syndrome occurs or how to prevent it. It appears in all races and in all countries, and is the most common chromosomal abnormality in humans. The only clue to its likely occurrence is the mother's age: women over 35 are significantly more likely to have babies with Down syndrome.

But Tierney is only 31, and that leads them to a surprising discovery. Of the 5,000 or so babies with Down syndrome born each year in the United States, 75 percent are born to mothers under 35. The main reason is that most babies are born to younger mothers. Their low odds of having a baby with Down syndrome are offset by the proportionately larger number of babies they bear.

That helps to explain why the number of children born with the disorder has remained stable for decades, despite the high abortion rate among women who know in advance. Because younger mothers undergo fewer prenatal tests, most don't know their unborn child has an extra chromosome. Also, the number of older women having babies is rising, increasing the overall incidence of Down syndrome.

From the literature, Tierney and Greg also learn that children with Down syndrome are as varied as other children, though they have certain consistent features. All are mentally retarded, most with IQs between 40 and 70 on a scale that considers 100 to be average.

Though often stereotyped as relentlessly happy, they have the same range of emotions as other children. Most have poor muscle tone, upward-slanting eyes, and faces that are broader and flatter than those of other children. Life-expectancy is 55 and rising. Many have vision problems, and heart defects are common, occurring in nearly half of all children with Down syndrome.

Greg and Tierney learn that surgery can correct the type of defect spotted in their unborn child's heart, but success is not guaranteed; some babies are doomed from birth.
When they awaken the next day it is Sunday and both feel drawn to church. Greg, raised a Baptist, and Tierney, a Catholic, consider themselves religious. And yet, they depart from church doctrine on key matters, most notably abortion rights, which they strongly support.

With no church of their own, they drive to the Church of Saint Timothy in West Hartford, where Tierney's mother sometimes worships. It is a fine brick building, surrounded by tall, strong trees.

Sitting in a pew, bathed in sunlight passing through stained-glass windows, Greg and Tierney hear a sermon about the role of prayer. It resonates so deeply it seems written just for them. "The miracle you pray for," the priest concludes, "may not be the miracle you receive."

From this moment on, there will be no more prayers for the baby not to have Down syndrome. What's done is done, they decide, and such a diagnosis might somehow be a miracle in itself, in ways they cannot yet fully imagine. Instead, Tierney and Greg will pray the heart heals or can be fixed by surgery.

Back home, Tierney begins to feel claustrophobic. With days until the test results come back, she wants to begin their delayed vacation on Martha's Vineyard. Reluctantly, Greg agrees.

Greg spends the ferry ride napping in the car, too tired and depressed to venture out on deck. It is a pattern that continues on the island. The first few days, Tierney goes alone or with Onyx the poodle to Philbin Beach, near the Gay Head Cliffs, to read and reflect under blue skies and a healing sun. Greg stays holed up in their rented house, slowly coming to terms with what their future might hold.

Then, on Thursday, they get a phone call from their obstetrician, Dr. Michael Bourque, with news about the FISH test.

"I'm really sorry to have to tell you this, but it came back positive," Bourque says. Chances for a different result are slim, he says, but the diagnosis won't be final until the amniocentesis results arrive next week.

Greg takes it hard, even though he had expected the news. It's worse for Tierney.

"I was dealing with it and trying to stay strong, and appealing to my better half that I could handle it," Tierney tells Greg. "Now, all of a sudden, it is going to be us."

There are tears to shed, more hard news to share with family.

The next day, Friday, exactly a week after the ultrasound, Tierney's sister Tara joins them on the Vineyard. Her visit unleashes new tensions.

Tara is a year older than Tierney, single, a veterinarian in Worcester. The two look and sometimes act like twins. They wear identical necklaces, presents Greg brought home from a trip to Ghana. Each necklace has a single pendant, an African symbol for "hope," that dangles over the heart.

Tara was the first person Tierney told that she was expecting. Tara has been kept informed about the difficult news by phone.

Before heading to the Vineyard with her golden retriever Winnie, Tara spent a night in Boston with their older brother George, 36, an architect and former Air Force captain, and his wife Allison, an anesthesiologist. Based on a discussion of medical information gathered by George and Allison, the three had reached a consensus: Tierney and Greg should abort.

Tara drops this bombshell when Tierney meets her at the ferry.

The conversation fuels Tierney's worst fears. She loves the unborn child kicking inside her, but if the heart defect is irreparable, maybe abortion is the right choice. Still, hearing it from Tara is devastating.

When Tierney and Tara reach the rental house, their reddened eyes are turned from each other. When Tara goes inside, Tierney tells Greg on the porch: "They think this is a big tragedy."

Tara walks back outside and into a confrontation with Greg, whose reading about the heart defect has made him more optimistic. He believes Tara, George, and Allison are overstating their medical fears to justify abortion. He suspects they really want to spare Tierney and Greg -- and perhaps, even themselves -- the difficulties and discrimination that come with Down syndrome.

"You know," he says sharply, "when this is all said and done, if it turns out more positively than everyone expects, some people will see us as having been pioneers."

Tara shoots back: "And if it doesn't turn out as positively as you expect, some of them will see you as having been stupid."

The next morning, Tara and Tierney have a talk that brings them full circle. After Tara apologizes, Tierney wistfully mentions that the children on Martha's Vineyard all seem so perfect.

Not true, Tara says. On the ferry, a pretty 4-year-old girl with Down syndrome came over and asked to pet Winnie. "She was so cute and so sweet," Tara says.

"Oh, Tara!" Tierney cries. "That's what God wanted you to tell me all along. That's what I needed to hear."

With that, Tara begins to understand how her sister feels, and what she needs.


Article list

Reaching a decision

December 6, 1999

Second of six parts

Greg and Tierney sit like defendants awaiting a verdict, their backs stiff, jaws clenched.  Holding hands in their obstetrican's office, thewy brace for the results of the final test that will reveal whether their unborn child has Down syndrone.    Dr. Michael Bourque leans across his desk, tries to meet their eyes with his, and softly begins: "I'm really sorry..." They were prepared for bad news, but still, tears wash Tierney's face. Greg feels the air rush from his lungs.

The amniocentesis test confirms the preliminary findings: If they continue this pregnancy, their child will be mentally retarded and marked by the distinctive features and ailments of Down syndrome. On top of that, the child will have a life-threatening heart defect.

 Greg catches his breath and asks Bourque: "What do people usually do? I mean, in terms of keeping the baby."

Bourque leans back in his chair and considers the question.

It is Tuesday, Aug. 4, 1998, 11 days since Greg Fairchild and Tierney Temple-Fairchild got the first hint of trouble during a routine ultrasound.

They returned home last night from Martha's Vineyard, having spent the last hours of an abbreviated vacation with Tierney's sister, Tara, and brother, George, who came to the island to offer support and advice. George sat with them on Philbin Beach and subtly pressed his case for abortion. Tierney and Greg said they were still gathering information, weighing options.

Once back home in Hartford, Tierney and Greg knew they weren't ready to resume their normal routines. Tierney called her boss at United Technologies, where she manages education programs, to say she needed more time off. She explained only that "complications" have arisen in her pregnancy. Greg made the same call to Columbia University, where he is a doctoral student and instructor at the business school.

Now, as they sit with Bourque at St. Francis Hospital, their every fear realized, they seek guidance that isn't forthcoming.

"People do all sorts of things in this situation," Bourque says. Through a haze of emotion, they hear him ramble through a noncommittal answer. He says some people don't abort under any circumstances, and others abort if the child isn't a boy. He also says an abortion would have to be done elsewhere; St. Francis is a Catholic hospital.

"It's really your decision. It's up to you," he concludes.

Afterward, Greg is irritated, feeling he gained little useful information about Down syndrome, the heart problems, or how to respond. He wonders why Bourque doesn't seem to know more.

Tierney, who has known Bourque since she was 19, suspects the doctor knows more than he's saying. She thinks: Is he worried about being sued? Does working in a Catholic hospital limit what he can say about abortion? Is he going overboard trying not to influence us?

They drive several miles to Connecticut Children's Medical Center to see a pediatric cardiologist, Dr. Harris Leopold. There, for the first time, they get an upbeat assessment from a medical professional: Leopold's nurse, Karen Mazzarella.

"Everything will be fine," she tells them. "Your biggest worry is going to be whether your child wants to ride a motorcycle or get a tattoo." In the hallway outside her office are bulletin boards covered with photos of children who have undergone successful heart surgery. They are babies, little kids, and teenagers, in a rainbow of colors. Some have Down syndrome.

Leopold is as encouraging as Mazzarella, even in his body language. Rather than separating himself with a desk, he cozies up close, pulling his chair forward so their knees almost touch. With detailed charts he illustrates the heart defect, explains its effects, and shows how it would be repaired.

He saves the best for last: "The success rate for this surgery is better than 90 percent." And, for reasons involving the shape and development of the heart valves, the prognosis is best among children with Down syndrome.

Greg feels vindicated. His reading about the heart defect had led him to believe the odds were promising. He refused to be shaken from that belief, despite the bleak scenario Tierney's brother presented of a brief and painful life for their child. But Tierney is oddly unsettled.

On the beach at Martha's Vineyard, she had told her brother she would only abort if she learned that the heart defect meant certain death. But now, despite hearing an encouraging assessment from Leopold, she is gripped by doubt.

She wonders if Leopold is downplaying the effects of a damaged heart on a child with Down syndrome. She probes for a darker response: "Will there be some kind of interaction between the two, so having the heart defect will stunt development and make it even harder for this child?" She asks it several times, in several ways. Each time, Leopold says no.

On the way home, Greg is fuming.

"Do you really want this child?" he demands. "What's wrong here? You've got doctors telling you that everything is going to be OK. Why don't you believe them?"

"I don't know," she says, the hope that had sustained her ebbing away. "Maybe it's their job. Maybe they only tell you the good parts because this is what they do. I'm not sure they're giving us the right information, or maybe he doesn't really know about Down syndrome. I just don't know."

She wants to see another doctor, a genetics expert who is an authority on Down syndrome. That appointment is in two days.

Tonight, though, there is unfinished family business.

Greg and Tierney still haven't called her father, Ernie Temple, an engineer as solid -- and at times, as unmoving -- as the granite of his home state of New Hampshire. Tierney was in the eighth grade when her parents split up.

"We've had some bad news about the baby," Tierney begins. When she finishes, Ernie says, "Well Tierney, that's really too bad. But you know, the way medical services have improved, with technology, there's a lot that can be done."

The phone call ends, and only then does Tierney catch his meaning. He didn't mean medical services and technology to help a disabled child. He meant abortion. She calls him back.

Ernie elaborates: "Do you understand what having a child with these disabilities is going to bring to your life, to both of you? You've got career goals, you're both professionals."

Then he shifts focus. "Do you understand the baby is going to be in pain? Do you want to put the baby through that?

"This child will cause trauma and tragedy from the first breath," he says.

Tierney is stunned but she tries again, telling Ernie about state-funded programs that promote physical and mental development among disabled children. She mentions it to suggest that there are resources available for their child. But Ernie sees it through the eyes of a staunch fiscal conservative.

"Do you really think it's fair to keep the baby?" he asks.

"What do you mean, `fair'?" Tierney responds.

"Knowing what you do about this child, is it fair for you to take state money, resources?" Ernie says.

Tierney lets the comment pass, but it is the harshest thing he has ever said to her.

There is little else to say. Tierney promises to consider his points, but tells him she hopes he will be involved with their baby if they decide not to abort. Ernie says he will, but he's hardly convincing.

Tierney is deeply disappointed, realizing only later that she had been seeking approval, not advice. Greg is angry.

He thinks it's possible Ernie is repelled by the idea of a grandchild with Down syndrome. But maybe it's something else: lingering race issues. Greg's thoughts rush back nearly a decade, to Ernie's reaction when he heard the two were dating.

Greg and Tierney met while working as managers at Saks Fifth Avenue in Manhattan, Greg in the dress department and Tierney in women's coats and suits. They were recent college graduates, Tierney from the University of Pennsylvania and Greg from Virginia Commonwealth University. Lunchtime chats evolved into heated debates on politics, society, and race. Romance bloomed.

When Ernie first met Greg and thought he was only Tierney's coworker, the two got along famously. But after Ernie learned the truth, he refused to speak to Greg for a year. Only with time and the inevitability of their relationship did he relent.

Still, neither Greg nor Tierney considers Ernie racist; Greg says he is on good terms with his father-in-law, and Ernie has grown close to Greg's parents, often visiting them in Virginia.

"I've come to believe his concern is about protecting his daughter, helping you avoid a life of discrimination," Greg tells Tierney. "As your father, he would prefer you not have to deal with it. When we met, his attitude was like, you could just stop dating me. And now, he's saying technology can help us avoid the problem, the discrimination, that comes with Down syndrome."

Ernie's opinion clouds an already difficult situation. And time is fast running out -- Tierney's pregnancy is approaching the 24th week, the point at which a fetus is considered "viable" and abortion is illegal except to protect the mother's life or health.

A decision looms, and still Tierney and Greg are shifting positions repeatedly.

Two days after the talk with Ernie, Greg and Tierney return to Children's Medical Center to see Dr. Robert Greenstein, a geneticist and authority on Down syndrome. Greenstein is as encouraging as Leopold was, explaining the strides being made in helping children with Down syndrome lead full and happy lives.

More good news, but Tierney is still struggling.

"What more do you need to know?" Greg asks.

Tierney is still worried about the heart, and also about the chance their child will be in the minority of Down syndrome cases with profound mental retardation. "Maybe we should do the termination," she says, avoiding the word abortion. "But I'm really conflicted. Even though I'm feeling good about all the information we've received, maybe we're trying to do too much."

Soon, Greg is beset by new doubts of his own.

"Is having a child with Down syndrome going to present all sorts of complications with other children?" he wonders aloud. "What about the younger children being required to take care of their older sibling, possibly for the rest of their lives from a financial perspective? Would keeping this child mean we aren't able to adopt a child later?"

The case for abortion seems to be growing stronger.

Greg calls his parents to voice his fears. At first Bob and Mary Fairchild listen quietly, as they have throughout these past two weeks. But Mary can hold back no longer. She blurts out: "So, you're just going to go with the abortionist?"

Bob, quiet by nature, decides it's time to speak up. "Gregory," he says to his beloved only son, "this is not a tragedy. This is not the end of the world. All of us are born with defects. If you and Tierney give this child the love you have for each other, this child will be all right."

The call helps, but Greg and Tierney want more answers.

Tierney asks their genetic counselor, Alicia Craffey, for phone numbers of people whose children have Down syndrome. The calls yield uniformly heartwarming stories of prom dates, family vacations, and sleepaway camps, of joyful children overcoming obstacles and enriching the lives of their parents and younger siblings.

There is some talk of financial strain, but -- unlike many prospective parents in their situation -- that issue plays little role in Tierney and Greg's decision. Both have already made career and educational choices that put personal goals ahead of monetary concerns. Instead of starting a college fund, they decide, they would open an "independent living fund" for their child.

Still there are nagging doubts. Using another number supplied by Craffey, Greg calls A Kids Exchange, an organization that helps arrange adoptions for children with Down syndrome. If the problems overwhelm them, they wonder, could an adoptive home be found for their baby?

"No problem," says Janet Marchese, who runs the matchmaking service from her home in White Plains, N.Y. "I have a long waiting list for these babies."

Greg asks, "What if it takes three years or more to determine how severely mentally retarded the baby is?"

She repeats: "No problem."

"OK then," Greg says, "How about finding a home for an interracial child, with Down syndrome and a heart defect?"

"No problem."

Now there are no more questions to ask, only a decision to make. After all the twists and turns, all the changes of mind and heart, that is the final piece of information they need.

Tierney and Greg talk about the encouraging medical outlook, the upbeat stories of children with Down syndrome, and the possibility of adoption. They talk about the mechanics of abortion. They talk about their sense of themselves and each other. They talk about their families. They talk about love.

They remain anxious about the heart, about severe mental retardation, and about the long-term effects on their lives.

But when there are no more words left to say, it doesn't add up to abortion. They look at each other and know they have decided: They will have this baby.

They call it a leap of faith.

"If I had to terminate, I could bring myself to do it," Tierney tells Greg through tears. "But to terminate in a circumstance where I was afraid of taking on a challenge, I just don't think I could live with the repercussions it would have on my life. On our life together.

"Why wouldn't I allow God to take this pregnancy where it needs to go? And if my baby is going to die in heart surgery, my baby is going to die in heart surgery. My dad might say, `Tierney, why do you have to go through that, or why does your baby have to go through that pain?' But I have to trust."

Five days later, Aug. 14, the legal deadline for abortion comes and goes. Greg doesn't give it any thought. Tierney has a twinge of doubt, but it passes.

Now that a decision has been made, they have to share it with their families. The hardest calls are to Tierney's father and brother because they were the biggest proponents of abortion.

Unwilling to confront Ernie, Tierney is brief and to the point. "I'll be there to support you," Ernie says.

Several weeks later, during a visit to Ernie's house in New Hampshire, Greg goes a step further. "I know you said you're going to be supportive, but you also said some things that indicate maybe you're not going to be," Greg tells him.

Ernie repeats his pledge of support, but doesn't waver from his original stand. "I'm supported in what I believe," he says of his contention that continuing the pregnancy would be a tragedy.

"Whether you agree or not with our decision," Greg says, "it's important that you be involved with your daughter. She needs you and wants that." Ernie says he understands.

Tierney is tougher on her brother. She tells George the information he shared with them was frightening, often wrong, and reflected his personal biases. George grows defensive, saying he was only trying to help. But in his own way, he eventually acknowledges her point. A few days later, a bouquet arrives, with a card from George and his wife Allison: "We love you and look forward to meeting our new niece or nephew."

As it turns out, an unintended byproduct of all the prenatal tests is an answer to that question: It will be a niece. To their delight, Tierney and Greg are expecting a girl.

With the decision made, Greg returns to school. Tierney goes back to work after role-playing with Greg about what to say when people ask about her absence. "I say, `I'm doing fine.' That's true. My baby's not fine, but I'm fine. I'm not lying, and I really don't need to go into it any more," Tierney says.

Over the next few weeks, Tierney and Greg slowly explain the situation to a select group of colleagues and friends. Some take it in stride, some cry, some pray, some offer sympathy. Tierney and Greg tell them there's nothing to be sorry about.

"Please don't be upset for us," Greg tells friends who take it hardest. "We're going to do what we have to do. It's serious, but it's not the end of the world."

Two acquaintances express surprise that it was genetically possible for an interracial couple to have a child with Down syndrome. On the flip side, Greg suspects some others think the mixing of races played a role, based on the flawed assumption that his and Tierney's genes were incompatible.

In fact, no link to race has been found in the 133 years since the syndrome was identified by an English doctor, John Langdon Down. The only known genetic link involves a tiny number of people who are hidden carriers; tests show neither Greg nor Tierney is one. To the best of anyone's knowledge their unborn child's condition was a fluke, a missed signal at conception.

As summer turns to fall, there are baby showers to attend and preparations to make. Tierney shops for baby clothes with her mother and sister. Greg's father Bob Fairchild refinishes an antique bassinet and ships it north. In it is a pillow embroidered with the words: "Anybody can be a father, but it takes someone special to be a Daddy."

In mid-November, with just weeks until the due date, the nesting instinct takes hold. Greg and Tierney buy an apartment in the complex where they have been renting. It has only one bedroom, just like their unit, but the price is too good to pass up. "It has a wonderful view of Taco Bell," Tierney jokes. "We'll have a new place, a new baby, new everything."

Bourque, Tierney's obstetrician, monitors the pregnancy closely. In November, her ninth month, there are signs that growth of the fetus has slowed. Bourque decides to schedule the birth for Dec. 3. Tierney will be induced to deliver, so specialists can be on hand to deal with any emergencies.

The slowed growth renews Greg's fears, which are compounded by the knowledge that the risk of stillbirth is higher among fetuses with Down syndrome. It is much too late to change course, so he decides not to share his thoughts with Tierney.

"If they had found some other kind of defect, like a limb missing, you know what you're getting into," Greg thinks. "They could tell you where the limb ended and where it began. They can't tell us how mentally retarded she'll be, how severe the effects of Down syndrome will be, and that's hard."

It is Sunday, Nov. 22, and Tara has come to Hartford to spend the day and see the new apartment. After her initial doubts, Tara now sees her unborn niece as a blessing and a gift.

Greg plans to make a chicken dinner, but first they have a leisurely lunch at the Prospect Cafe in West Hartford. Greg and Tara talk animatedly about work, but Tierney sits quietly.

They come home and pop a movie into the VCR. As night approaches, Tierney grows increasingly certain something isn't right. She grabs her copy of the pregnant woman's bible: "What to Expect When You're Expecting." She rustles through the well-thumbed pages, searching for information on fetal movement.

"I can't remember the last time the baby kicked," she tells them both. Turning to Greg, she says quietly: "I'm worried."


Article list

A difficult birth

December 7, 1999

Third of six parts

Tierney curls herself up into a fetal position on a hospital gurney. She is shaking, praying, drawing air with shallow breaths as a doctor inserts a needle into her spine.    Her eyes are wild. As the needle slides between two bones of her lower back, a strange, piercing sensation shoots down her leg as though she has stepped on a live wire. She feels alone and afraid; her husband, Greg, has been told to wait outside the operating room.    Tierney's mind races. She thinks of the day four months ago when a routine ultrasound foretold her baby's future, her husband's, and her own. The memory makes her shiver more, and the doctors who surround her take notice.

"There's nothing to be nervous about," says her obstetrician, Dr. Michael Bourque.

She nods, but says to herself: "Oh yeah. I'm having this emergency delivery, my baby has all these problems, but there's nothing to worry about."

It is Nov. 22, 1998, 11 days before Tierney was originally scheduled to deliver a baby girl with Down syndrome, a major heart defect, and uncertain prospects.

The day began leisurely enough, with a visit from her sister, Tara, and plans for a roast chicken dinner. But as the hours passed, Tierney grew increasingly aware that her unborn child -- on most days an active kicker -- was unnervingly still.

Tierney had seen Bourque just four days earlier, and everything seemed fine. He even warned her to expect less kicking as the due date approached, because the baby would be taking longer naps. But this nap was lasting too long.

When Tierney shared her worries with Greg, he went to a drug store and bought a stethoscope to listen for a heartbeat. All they could hear was a gurgling sound, so Tierney called Bourque's office. He told her to drink fruit juice and eat a candy bar, to see if they could stimulate the baby with sugar.

An hour later, as day turned to night, still nothing.

Another call to Bourque prompted action: He instructed her to go immediately to St. Francis Hospital so he could check the baby's vital signs. Tierney and Greg rushed out without packing a bag, leaving gifts and baby clothes strewn across their bed, scared but fairly certain they'd be home soon.

At first, the fetal monitor strapped by a nurse around Tierney's middle picked up a steady heartbeat. Their anxieties started to ease. But the heart monitor was set for 45 minutes to track the beats over time. Soon the beats grew further and further apart. "I better get Dr. Bourque," said the nurse at Tierney's side.

Along with Bourque came an ultrasound machine, which showed that Tierney and Greg's unborn daughter wasn't moving. The amniotic fluid that normally bathes a fetus in the womb had dried up; Tierney's body apparently had stopped producing it. Bourque asked a medical resident to assess the situation.

"Since she has no fluid, I'd give her a zero for that. And I'd give her a one for movement," the resident said. On a scale of 10, Tierney and Greg's unborn child was failing badly. The chance of a stillbirth -- already higher than usual as a result of the Down syndrome -- was increasing with each passing minute.

"Your daughter wants to be delivered tonight," Bourque said.

With Greg running alongside, a birthing team rushed Tierney to an operating room and began preparing for an emergency caesarean section, in which an incision is made through the abdomen and uterus to quickly remove a baby.

Now, not two hours since arriving at St. Francis, Tierney is curled on the gurney and the anesthesiologist is injecting her spine with drugs that will numb her lower body.

As he waits outside, Greg dons blue-green hospital scrubs and calls Tierney's mother and sister. After a few minutes, the anesthesiologist pinches Tierney's leg to test if the drugs are working. When Tierney can no longer feel the doctor's touch, Greg is admitted to the operating room.

He sits at Tierney's side and watches Bourque work.

Bourque calls to them, just moments after making the incision: "We can see the baby's head." He moves with a single, practiced motion, like a father lifting a child who has fallen. Bourque pulls from Tierney's uterus a baby covered with the muck of new life.

It is 10:16 p.m. and Tierney Temple-Fairchild and Greg Fairchild have just become the proud and nervous parents of a 5-pound-12-ounce, 17  3/4-inch, brown-haired, not-quite-healthy baby girl.

Quickly the umbilical cord is cut, ending not only the baby's physical attachment to Tierney, but also cutting off the rich supply of blood that her own damaged heart cannot provide. If she survives, she will need major surgery before she turns one.

Tierney's face is screened by a drape, and she hears only the faintest noise from her newborn daughter. She knows the baby is alive, but she is frightened by the absence of a hardy cry. Tierney prepares herself for the worst.

"Did I do something wrong?" she asks Greg.

"No, nothing," he tells her. Setting aside his own worries, Greg smiles and says she did great. He doesn't mention that their baby's skin seems to have a blue cast and her movements are sluggish. On the positive side, Greg notices she has relatively good muscle tone, in contrast to the "floppy" body they were told to expect from a newborn with Down syndrome.

A team of neonatal specialists swings into action, taking the baby into an adjacent room with Greg following close behind. They suction fluid from her nose and mouth. They clean, dry, weigh, and measure her, speaking to her in dulcet tones.

They give the baby a dangerously low score of 2, out of a possible 10, on a newborn health scale that measures heart rate, breathing, muscle tone, color, and reflexes. After five minutes, the score rises to 5; at 10 minutes, it is 7, a hopeful sign but no guarantee of survival.

Tierney is still on the operating table, dazed and anxious. She begins to shake again as Bourque closes the incision. As he sews, he comforts her, praising her for recognizing the danger: "Nice call. You saved your daughter's life."

Still, Tierney is doubtful, wanting to see for herself.

Greg returns minutes later, wheeling the baby toward Tierney in a plexiglass bassinet. He lifts their swaddled daughter and puts her close to Tierney's ashen face. She brightens, marveling at the delicate life they have created.

"Oh! She's beautiful," Tierney says.

But then, the combination of anesthesia and stress catches up to Tierney; she starts throwing up. For the first time, Greg is forced to juggle his roles as husband and father. He trades the baby for a bedpan, and holds it for Tierney.

When everyone is cleaned up, they head off in separate directions. Tierney is taken to the recovery room. The baby is brought to the neonatal intensive care unit. Greg goes searching for Tara and Tierney's mother, Joan Temple.

When he finds them outside the maternity ward, Greg says, "You have a granddaughter. You have a niece." Joan kisses him. Tara grips him in a long, strong hug.

"My baby had a baby," Joan says over and over.

Greg leads them to the intensive care unit. It is dark and quiet, yet a buzz of smooth efficiency saturates the filtered air. Nurses glide silently among seven bassinets, four of them containing babies who barely crease the crisp white sheets.

Around each bassinet is a maze of high-tech machinery and intravenous feeding tubes, oxygen tanks, and monitors that glow and hum and keep watch like worried parents. Not all these babies will be going home.

A nurse leads them to their daughter, granddaughter, and niece, who is napping in bassinet No. 5 from the exhaustion of birth. They marvel in unison at the baby in the tiny knit cap with tufts of hair peaking out. They admire her long fingernails and rosebud lips.

"Hello sweet baby," Joan says. "Hello."

Left unspoken are the doubts about her survival. Her serene countenance notwithstanding, the baby's bloodstream has a dangerously high level of acid -- an indicator of insufficient oxygen in her system. She has a frighteningly low number of platelets, which are necessary to stop bleeding. She will get at least one transfusion in the next two days. She requires supplemental oxygen from a tube in her nose. Later, it will come from a transparent tent over her entire face.

Her blood pressure is low, her kidney function is questionable, her lungs don't seem to be working quite right. She still hasn't had a good cry. She shows signs of an infection, though the doctors aren't certain about that.

Then, of course, there's the hole in her heart. It's not clear how many of the ailments are linked to that, but most appear to be the result of her difficult last hours in the womb.

Later, Bourque explains that Tierney's placenta -- the organ that links the baby to the mother -- had begun shutting down early, depriving the baby of nourishment. It is a relatively common occurrence among babies with chromosomal defects like Down syndrome, and he suspects the baby would have died within a day if not for the emergency delivery.

At 1 a.m., his daughter now three hours old, Greg stands over her, trying to digest a torrent of information about the monitors that surround her. He furrows his brow and studies the heart rate, the blood pressure, the oxygen saturation level. It is as though he is trying to move the numbers to their proper levels through sheer will and new love.

"Can I touch her?" he asks a nurse. She explains he will need to thoroughly scrub his hands and arms. He wants to, but knowing that Tierney is alone and waiting, he declines.

When they are reunited in the otherwise empty recovery room, Greg shares with Tierney what he knows of their baby's condition. Tierney feels pleased she realized there was a problem. But she wonders if her active lifestyle was partly to blame, and she wishes she had called Bourque sooner.

"Did I reach too high? Did I do something? Did I not rest enough?" she says. "What would have happened if I didn't call at all? Would the baby have died?"

Both Tierney and Greg wonder: Will she die anyway?

It is after 2 a.m. when they drift off to sleep in Tierney's hospital room, she in the bed and Greg scrunched on a fold-out chair. But first, they formally give their baby a name they had settled on.

Like most expectant parents, Tierney and Greg had spent the last months of pregnancy puzzling over names, adding and deleting prospects on a list posted on their refrigerator. Both were drawn to unusual names, and something clicked when Greg spotted Lake Nyasa -- a huge body of water in Malawi -- while scrolling through a computerized encyclopedia.

Fiddling with the lettering and dropping the "s," they came up with Naia, which they pronounce "Nye-uh." Only later will they learn it is more appropriate than they ever imagined. With a slightly different spelling, their baby's name is a Swahili verb that means "decide." As a noun, it means "purpose."

For a middle name, they chose Grace. For Tierney, it evoked the hymn "Amazing Grace" and had the added benefit of honoring a relative of her father's who died young. For Greg, it reflected a desire to heal the wounds that surrounded their decision.

"For me, grace is the concept of forgiveness," he told Tierney. "This has not been easy on our family. I believe, or I wish, that the baby will do more to raise people, to change people's expectations and beliefs. She provides an opportunity for people to have grace, to mend bonds that were strained."

When day breaks, Tierney sleeps late while Greg goes home to walk their dog. When he returns, they are eager to see Naia Grace and learn more about her condition.

When they enter the intensive care unit they meet one of several new doctors in their lives, cardiologist Seth Lapuk.

In a small conference room away from the bassinets, Lapuk elaborates on what Greg and Tierney already know about the heart defect, the low blood pressure, the lack of pressure in the lungs, the whole array of problems facing Naia.

Then Lapuk tells them a more personal story.

One day when he was a boy, he was playing in his family's garage, trying to reach a wall-mounted button that would open the electric garage door. He arranged a teetering stack of boxes under the button and began climbing. He was halfway to the top, when his younger brother came in. Without a word, the younger boy went over to a car parked in the garage, reached in and hit the remote. The door rose while Lapuk watched in astonishment.

Lapuk's younger brother has Down syndrome.

"Don't underestimate what your daughter might do. Expectations with these children are often lower than they should be," Lapuk says. "You don't know what can happen."

Lapuk's story heartens them as Greg pushes Tierney's wheelchair toward Naia's bassinet.

Tierney leans her head against Greg's side. "That's our baby," she says. It is the first time Tierney has seen their daughter outside the delivery room.

Greg touches Naia, his hand as big as her entire torso. "It's OK little girl. It's OK," he says.

"She looks good," Tierney says in a quiet, hopeful voice, her eyes half-closed from painkillers and lack of sleep.

Later, back in Tierney's room, there are three books on a table by her bed: "What to Expect the First Year," a memoir on race called "Life on the Color Line," and "The Holy Bible." Martha Stewart is on the television, on mute.

A bouquet from Joan brightens the room. A camera sits on a rolling table, waiting for a happy moment to record.

For now, the joy at the arrival is tempered by fears about Naia's health, prompting reflections on their decision.

"You know, the baby might not make it," Greg tells Tierney, his voice choked with emotion. If Naia dies, he says, some people will think: "You see, you should never have had this baby. It was tragic for the baby, it was tragic for you, and you should have terminated months ago and saved everybody this huge problem.

"And as traumatic as that will be for us, I think, yeah, it will make those people feel better because it will confirm what they were thinking all along," he says.

Tierney nods in understanding, but no matter what anyone else might say, she is convinced they made the correct choice.

"The baby is doing well enough that she deserves a fighting chance, and she deserves her own opportunity," Tierney says, slumping in her hospital bed. She wears a pink bathrobe over a white nightgown. Around her neck is her "hope" necklace, which she hasn't removed since arriving at the hospital.

"It's not like she's on a respirator. She's breathing on her own. Yes, she's got some challenges and she might not make it, but this was the right thing to do. I'm convinced of that."

Tierney's beliefs were reinforced by the sight of one of the other babies in the intensive care unit, a baby that looks like Naia in miniature. The baby's grandmother was holding her in a rocking chair, whispering encouragement to the frail infant. The woman's focus was complete; she never looked up.

The baby's mother was in a car accident that triggered premature labor. The baby was born at 26 weeks -- 14 weeks premature -- and weighed just 1 1/2 pounds. Tierney realizes that's roughly the same size Naia was when they were deciding whether to continue or abort.

"They are spending a ton of energy saving this baby," she tells Greg, "and this baby is worth saving." For a moment, it isn't clear if Tierney is talking about the other woman's child or her own. Then, gulping air between words she'd rather not speak, Tierney adds, "We had to give her the chance to make it. And if she . . .can't. . .she. . .can't."

As the days pass, Naia clings ever more fiercely to life. Responding to intense, around-the-clock care from the St. Francis staff, she begins to show slow but steady improvement.

Her kidneys begin to work and the oxygen level in her blood rises. The acid in her blood is tapering off. She has begun to shed some of the IV's, monitoring devices, and other medical appendages that had sprouted from her tiny body like tentacles.

Yet problems remain, including a persistently low platelet count in her blood.

On her fourth full day of life, it is Thanksgiving, and Joan delivers dinner to the hospital. Before eating they say grace, which has special meaning now that the word is Naia's middle name. Their prayer includes an offer to help those in need.

It occurs to Tierney their wish has been granted. "I'm really supposed to be helping somebody less fortunate, and it's going to be my baby," says Tierney, as she prepares to go home without Naia.

When Naia is six days old, her condition has improved enough to supplement intravenous feedings with breast milk. Until now, Tierney has been using a pump to collect her milk, storing it for later use. On her first try at the breast, Naia doesn't take much, and tires quickly, but it pleases Tierney just the same.

The next day, Sunday, Nov. 29, Naia gets her first visit from Tierney's father, Ernie Temple, who had argued against her birth but now is trying to live up to his promise of support.

Beforehand, Ernie and Tara went shopping so he could buy a changing table for Naia. They also tried out rocking chairs, and Ernie seemed ready for a grandfatherly role.

On their way to the intensive care unit, Greg tells Ernie about his granddaughter's medical problems and prepares him for what he will see. When Greg picks up Naia, Ernie says she looks good. Then Greg asks Ernie if he wants to hold her.

"No. Not this time," Ernie says. The visit ends.

Afterward, Greg and Tierney think Ernie's reluctance was innocent, reflecting his fear of detaching one of her tubes or otherwise harming such a fragile baby.

"Or, you can go with Option Two," Greg says, "and he's uncomfortable with this baby, period. We don't really know."

Five days later -- Dec. 4 -- Naia has beaten the worst of her most immediate problems and is ready to go home. She has been in the hospital 12 days, eight more than planned.

It's a surprisingly warm December day, with temperatures topping 60 degrees and the roses outside St. Francis still showing off their rich red petals.

Greg's parents, Bob and Mary Fairchild, have taken a train up from Virginia to meet Naia and escort her home. Both were firmly in favor of continuing the pregnancy. Now that the baby is here, Mary gives voice to their hopes for the future. It sounds like a promise and a prayer.

"I think a lot about how the world will treat Naia," she says. "But the people who love her will be so heavily weighted on her side that how the world perceives her will be totally irrelevant.

"I know it will be challenging for Greg and Tierney," Mary says as Bob nods in agreement. "I wish more than anything they could have had the healthy child they were hoping for. They didn't, and that hurts a lot. But I admire them, and I know they will always want the best and do the best for Naia. That will never change."

After a final briefing from doctors, Greg and Tierney emerge with Naia. They are beaming. Just a few days ago they didn't know if she would ever leave the hospital.

Naia is bundled enough for a blizzard, tucked under a crochet blanket that was a gift from the hospital. At her side is a black-and-white stuffed dog. She yawns and looks around, at the lights on the ceiling, at her parents.

A nurse pushes Naia's bassinet, but Greg keeps one hand gripped on the side, as if to keep it from rolling away.

On the short drive home, Naia falls asleep. Greg carries her into the apartment, still buckled in her new car seat. He gingerly sets her down on the floor and looks to Tierney.

"OK. Now what?" he asks.

"I don't know," Tierney answers.


Article list

Struggling to grow

December 8, 1999

Fourth of six parts

Naia latches onto Tierney's breast, her eyes rolling back in sleepy serenity, her body more relaxed with each sip of milk.   "Yes. You're a good eater, Nai-nai," Tierney whispers, cradling her baby on their living room couch.   Greg is setting the table for a takeout Chinese dinner. A small Christmas tree waits expectantly nearby; snow flurries brush against the apartment window; a jazz CD plays softly.

But this is no blissful family tableau.

Naia's skin has a distinctly yellow cast. Tierney's mouth is a tight line. Her eyes are red and her neck muscles dance under the collar of her white turtleneck. Greg is unshaven, funereal in all black clothing.

During the 10 days since she came home from the hospital, Naia has stubbornly failed to thrive.

It is Dec. 14, 1998. Naia is 22 days old and weighs 5 pounds 14 ounces, just 2 ounces more than her birth weight.

Her damaged heart is struggling to pump enough oxygen to the rest of her body. Her liver isn't working properly. She's brewing a urinary tract infection. She is sleeping too much, eating too little. Her system is so fragile that a cold could kill her.

Having decided to continue the pregnancy knowing their child would have Down syndrome and a heart defect, having soldiered through the difficult birth and frightening first days of Naia's life, Tierney Temple-Fairchild and Greg Fairchild are finding that the problems keep piling up. More even than they had allowed themselves to imagine.

"We're in that grind of always worrying that there's something else we need to worry about," Greg tells Tierney.

And there is good reason to worry. With each passing day, Naia's body is in a more urgent race with itself.

Despite weakness and lethargy, Naia needs to quickly gain enough weight to survive the heart surgery she needs for a chance at a healthy life. If she gains the weight, she can win the race. But if her heart begins to fail before she is strong enough for the operation, the surgery itself might kill her.

The first goal in Naia's life is deceptively simple: 8 pounds. That is how much doctors believe she should weigh before they risk opening her chest to repair her heart.

Eight pounds is within the normal weight range for newborns, but it seems months away for Naia. Now, with Naia's growth rate stalled, Tierney and Greg face difficult new choices.

First among them is whether to end breast-feeding and switch exclusively to a bottle, using breast milk Tierney collects with a suction pump. Already, when Greg feeds Naia breast milk from a bottle, she finishes more quickly, is less tired afterward, and seems to drink more than when she nurses directly from Tierney.

Naia's pediatrician, Dr. Della Corcoran, has even begun dropping hints about ending Naia's reliance on breast milk altogether, switching her to a high-calorie formula more likely to hasten weight gain.

Greg and Tierney want to do what's best, but it seems odd that breast-feeding -- usually the best choice for babies -- might be placing Naia at greater risk. It is particularly hard for Tierney. She was eager to breast-feed, believing it would help Naia flourish, despite the mental retardation and physical disorders of Down syndrome.

"She's getting a bonding experience from me, which I love and I'm sure is good for her," Tierney says. "But why am I doing this if it comes at the expense of her gaining weight, which I know is the most important thing right now?"

Sighing, she adds, "It's just all so hard."

The question of breast milk or formula will haunt them for several more weeks. But it is not the only challenge that Naia, Tierney, and Greg face on the road to 8 pounds.

Eight days later -- Dec. 22 -- Naia is one month old. A visit to the doctor takes the place of a celebration.

While waiting to see their pediatrician, Greg and Tierney sit with Naia in the waiting room and listen to a mother laughingly complain about how big and heavy her daughter was at birth. Her baby is the same age as Naia, but twice the size.

Greg and Tierney offer the woman wan smiles but say nothing. Comments about Naia's size -- "Is she a preemie?" -- are common on the infrequent occasions when Tierney and Greg expose Naia to the world, where the winter cold and potential for illness must be avoided at all cost.

Things only get worse inside Corcoran's office. The doctor delicately places a squirming Naia on a counter-top infant scale. Greg and Tierney watch intently, barely breathing.

Naia is 5 pounds 14 ounces. No change in more than a week. Tierney throws her hands up in frustration.

This means the end of pure breast milk. Tierney can nurse Naia twice a day, Corcoran says, but four other feedings must be from a bottle of breast milk mixed with a formula called Pregestimil.

Corcoran explains that Naia's slow growth is most likely a result of her heart's failure to pump enough oxygen-rich blood, without which her body lacks the fuel it needs to gain weight. The formula should boost her growth despite the heart defect.

Tierney is upset but tries not to show it. She realizes the most important thing is that Naia get those calories. She dutifully records Corcoran's instructions in a small brown notebook she has begun carrying to keep track of Naia's lengthening list of medical problems.

Corcoran also notices that Tierney and Naia share a common yeast infection called thrush -- on Tierney's breast and in Naia's mouth. She prescribes an antibiotic called Nystatin. Naia needs it four times daily; twice a day for Tierney. Again, Tierney writes it down in her book.

Since last week, on orders from her cardiologist, Naia also has been taking a heart medication called Lasix. Defects such as Naia's -- a hole between the chambers -- can lead to a buildup of salt and fluid in the body, which compounds heart problems. By encouraging urination, Lasix helps to improve heart function.

During the examination, Corcoran adds an unintentional insult to the injury of Naia's newly diagnosed ailments. Corcoran refers to her as "my little peanut," and Tierney recoils.

"What's the matter?" the doctor asks.

"We don't use the word `peanut' for her," Tierney says, calm but cool. She tells Corcoran the word has negative racial connotations, particularly in the South, where Greg grew up.

Corcoran says she calls all her infant patients peanut, but apologizes and says she won't refer to Naia that way again.

The doctor punctuates the visit by saving the worst news for last: Naia is jaundiced, a clear sign of liver problems and the cause of her yellowish skin tone.

Jaundice is not uncommon among newborns, regardless of whether they have Down syndrome or a heart defect. Sometimes it's related to breast-feeding and clears up on its own. But there's another kind of jaundice that is potentially lethal.

Instead of returning home as planned, a discouraged Tierney and Greg drive to Connecticut Children's Medical Center. There, Naia must undergo blood tests to check her liver function.

Before the tests, Greg and Tierney go to the hospital pharmacy to fill her new prescriptions. While they wait, a little boy walks over to them. He has an awful, hacking cough, but his mother does nothing to draw him away from Naia.

Tierney looks to Greg with pleading eyes, fearful that -- on top of everything else -- Naia will catch a deadly germ.

"Don't worry," Greg says softly, shielding Naia as best he can until the boy leaves. "He was far enough away."

Tierney nods, but her face betrays her stress.

Medicine in hand, they go to a small room on the hospital's second floor that is gaily decorated with hanging mobiles and cartoons of Barney and Tweety Bird. A nurse has trouble finding a vein from which to draw Naia's blood. Naia screams. Tierney winces.

As they wait for Naia's cries to end, they notice a poem pinned to the back of the door, placed there by a hospital worker whose son nearly died. Shoulder to shoulder, Greg and Tierney read its rhyming couplets. The closing lines read:

"We'll love him while we may. . .

But shall the Angels call him

Much sooner than we planned,

We'll brave the bitter grief that comes,

And try to understand."

Finally, Naia's blood drawn, they scoop her up, hold her close, and bring her home.

Since Naia's birth, medical problems and routine care have dominated Greg and Tierney's time and thoughts. Naia's first Christmas is a low-key affair. Gifts run along the functional lines of baby clothes and a bottle sterilizer.

Yet in the quiet moments between feeding, diapering, medicating, and sleeping, they reflect on the decision they reached nearly five months ago. The discussion is triggered when Greg finds a Newsweek magazine lying around the house. It's long out of date, from March 22, 1997, but they had never read it.

Deep inside Greg notices an article on birth defects and prenatal screening. It contains this line: "Down syndrome in theory is completely preventable, in the sense that there is a reliable test for the extra chromosome known to be its cause, after which the pregnancy can be terminated."

Greg and Tierney know that, but the next line comes as a shock: Among women who learn they carry a fetus with Down syndrome, about 90 percent abort. At last, they have an answer to the question Greg had tried to ask their obstetrician, Dr. Michael Bourque: "What do people do?"

"There's no changing our decision, not that we'd even want to," Greg says. "But 90 percent? It's human nature when you do something to look around and see what other people have done. But to hear that you're so in the minority. . . .

"You have to wonder," he adds, "what do the other nine people know that we don't?"

It dawns on Tierney that, based on the 90 percent figure, nearly everyone they've told about their decision would have made the opposite choice. It's also possible that some people they've told actually faced the decision and chose abortion.

"That shouldn't surprise you," Greg says. "You probably wouldn't do the same thing that 90 percent of other people would do in most cases, anyway."

Tierney smiles and thinks about their decision to marry across racial lines. "Well, I guess that's true about both of us." Greg smiles back.

It is Jan. 14, 1999. Naia is nearly eight weeks old and weighs 6 pounds 8 ounces. She has gained 12 ounces since birth, 10 in the past three weeks, the result of orders by Corcoran to add even more formula to her feedings. Eventually, the formula will be mixed as thick and rich as a milk shake.

Still, Naia is a pound and a half away from her goal, and time is growing short. Surgery is needed sooner than expected.

Naia's heart is barely keeping pace with her body's hunger for oxygen. To compensate, she takes deeper and deeper breaths. With each one, her skin sucks up and under her ribs, making her chest look like a child-size xylophone.

Naia's cardiologist, Dr. Harris Leopold, has been teaching Greg and Tierney to look for signs of congestive heart failure, in which the heart is unable to pump blood with enough force to the body. One sign is a bluish tint to the skin.

Greg and Tierney always expected they and their child would be aware of black and white. Now, they also have to worry about the yellow of jaundice and the blue of heart failure. To top it off, a fifth skin color has entered the mix: pink.

Just before Christmas, Tierney took a picture of Naia to a photo shop across the street from their apartment to order reprints for faraway family and friends. A few days later, Greg picked them up and brought them home.

"Greg, they lightened Naia's picture!" Tierney fumed when she saw the results. "She looks a lot whiter than she did in the original." She marched across the street with the original photo and confronted the man who had taken her order.

"I don't understand why you did that," she said.

"I'm sorry," he said sheepishly. "I just looked at your complexion and figured that she would look like you. It's just that most babies are pink, so I made her pink."

"She's not pink," Tierney said.

He agreed to redo them. No charge.

During the early weeks of the new year, Naia's heart remains a priority, but her liver problems have begun causing even bigger fears. The source of her jaundice remains a mystery.

Two weeks of near-daily visits lead Naia's liver specialist, Dr. Jeffrey Hyams, to conclude that Naia has one of the more dangerous types of jaundice. He suspects it's either a blockage in the tubes that connect the liver to the small intestine, or an inflammation of the liver called neonatal hepatitis.

Hepatitis can be treated with drugs, but a blockage likely would require surgery. There also is a possibility that Naia's liver will fail completely, requiring a transplant. In the meantime, Hyams tells Greg and Tierney there's a good chance Naia needs a liver biopsy, a surgical procedure in which cells from the liver are removed for extensive tests and microscopic analysis.

When added to the looming heart surgery, the prospect of liver surgery, a transplant, or even a biopsy frightens and depresses Tierney and Greg.

Hyams also diagnoses the urinary tract infection, which requires Naia to take another antibiotic, amoxycillin. He prescribes vitamins K and E, and a multivitamin called Polyvisol. It fills another page in Tierney's medical notebook.

After days of fear and uncertainty, Tierney and Naia go to Hartford Hospital for a procedure in which a chemical is injected into Naia's body then traced as it moves through her system. If it doesn't pass from her liver to her intestine, a life-threatening blockage would be the most likely culprit.

To perform the test, a technician places Naia on a padded gurney, using straps to immobilize her under a machine that tracks the chemical. She screams and struggles, but eventually surrenders to sleep. Tierney also succumbs to stress and exhaustion, nodding off in a chair at Naia's side, her head down on the gurney just inches from her daughter's.

When they awake, the technician has the first bit of good news in what seems like a long time. The chemical passed into Naia's intestine; she doesn't have a blockage. "Our prayers were answered," Tierney tells Greg when she and Naia come home.

Naia's jaundice remains an issue, but from that and other tests, Hyams concludes she most likely suffers from neonatal hepatitis. It is an ailment of uncertain cause -- possibly an infection, possibly some link to Down syndrome -- that will resolve with medicine and time.

No surgery, no biopsy, no transplant needed.

And soon, Naia's skin will begin to lose its yellow tint.

A casualty of their worries about the heart, the weight, and the jaundice is Tierney's effort to breast-feed. By mid-January she is no longer even collecting her milk and mixing it with the formula. "I did the best I could," Tierney tells herself.

Left in the freezer are 15 glass bottles, each filled with four or five ounces of breast milk. Tierney doesn't want to dilute the thick formula, yet she can't bear to throw them out. So they remain in the freezer, until they spoil.

Back in August, when Greg and Tierney were choosing to have Naia, the most vocal opponents were Tierney's father Ernie and brother George. Now, both are trying in their own ways, with varying degrees of success, to heal the rift.

On his first visit with Naia, in early January, George steps into the role of favorite, and only, uncle. He holds Naia, smiling and laughing. When bedtime comes, he kneels by her cradle, rocking her gently and telling her it's time to sleep.

"I'm sorry," George tells Greg and Tierney. "I wish I had never said anything." They embrace and forgive him.

Ernie, meanwhile, has expressed himself mostly with gifts, sending Naia a playpen for Christmas along with pants, booties, a yellow sweater, and several body suits. Tierney assumes the clothes were the work of Ernie's girlfriend, whose daughter runs a company that sells clothing for undersized babies.

When Ernie drops by on a business trip, he keeps his distance from Naia. He seems interested when Greg and Tierney describe her ailments, but he won't hold her. There is no change of heart, no apology for saying her birth would be a tragedy.

Ernie's rigidity makes Greg and Tierney wonder if his attitude reflects something more than race, something more than what he said about having a baby that burdens society and themselves. They wonder if her problems are stirring up painful memories of his own past.

Ernie's only sibling, his younger brother Norman, suffered from a severe birth defect. A kind and funny man, Tierney's uncle and godfather, Norman Temple was handsome. But only from one angle. The other side of his face was deformed, his nose and eye crushed like kneaded dough.

When Norman was a teenager, a surgeon attempted to repair some of the deformities by sewing his hand to his face. It was one of several painful attempts to grow new skin, and they met with limited success.

Ernie had looked out for his kid brother when they were boys, and he cared for Norman before he died of cancer in 1989.

Early in Tierney's pregnancy, before they knew about Naia's Down syndrome, Ernie made a comment that struck them at the time as strange but unimportant. It began when Greg asked Ernie if he had any advice or concerns about his unborn grandchild.

"Well, you're both physically fit, and you both have good genes," Ernie said.

Thinking back, Greg and Tierney are certain the message was: "You don't want to suffer through our experience with Norman."

"It's like that was the ultimate test for him, his ultimate fear," Greg says. Finishing his thought, Tierney says, "And now it's come true, like a self-fulfilling prophecy, and it's difficult for him to accept."

Slowly but surely, the heavy diet of formula takes effect. By Jan. 28, Naia weighs 6 pounds 13 ounces. On Feb. 11, she is 7 pounds 4 ounces. On Feb. 26, she is 7 pounds 8 ounces. Finally, by March, she reaches 8 pounds.

Still, her growth rate is troublingly slow, and her heart defect continues to tax her body. Hope that surgery could wait until late spring is cast aside. It will happen by April 1.

In the meantime, despite all her challenges, Naia has been growing into an individual in her own right.

She seems to recognize her name. She is starting to like baths, especially when someone sings "Rubber Ducky." She has a favorite toy, a stuffed red Elmo doll, from Sesame Street. She follows objects with her eyes, particularly ones with bright colors and bold patterns. She sings out in little yelps. She smiles an innocent, toothless smile. Greg melts every time she gives him one.

A few days before Naia turns four months old, Greg tells Tierney: "I think Naia is beginning to look a lot like me."

"She's cuter," Tierney says, and they both laugh.

Tierney returns to work, having received a promotion and arranged a schedule that will allow her to work from home some days. Greg works at home on his doctoral dissertation and oversees daytime care of Naia -- with some unexpected help.

Just before Tierney's maternity leave ended, Greg's mother, Mary Fairchild, moved to Hartford from her home in Virginia. While Greg and Tierney remained in their old apartment, Mary settled into the new place Greg and Tierney had bought just before Naia was born.  Greg's father will join her when Naia has surgery.

It is March 16, and Naia's growth has stalled again. The operation will be in two weeks. Today Greg and Tierney tour the surgery suite at Children's Medical Center.

Despite the growth problem, Tierney has been feeling confident about Naia's prospects. "I am ready for Naia to be the Naia that I know she's going to be afterwards. Only occasionally do I think that maybe something will go wrong," Tierney tells Greg.

Greg, on the other hand, has grown increasingly worried. "It's major surgery," he says. "And then it's the idea of her having all that stuff attached to her. It's depressing."

At the end of their hourlong tour, as they walk into the intensive care unit, Greg and Tierney notice a commotion at the end of the hall. Five doctors huddle, talking in low tones with grave looks on their faces. Just outside the doctors' circle, a young couple stands limp, sobbing and rocking and making feeble, futile efforts to comfort each other.

The tour guide hurriedly turns Greg and Tierney the other way.


Article list

Mending a heart

December 9, 1999

Fifth of six parts

The doctor in blue surgical scrubs holds out Naia to her worried parents. "Give her a kiss," he says.

Tierney and Greg take turns touching their lips to Naia's soft cheeks, then looking at each other with watery eyes and a shared thought: He's telling us to say goodbye.

Dr. Craig Bonnani, an anesthesiologist, says nothing. He either doesn't sense their anxiety or doesn't want to make it worse. Bonnani leaves with a bouncy walk, holding Naia in one arm, like a football.

Doctor and patient are headed down the hall to an operating room at Connecticut Children's Medical Center.

Over the next five hours, if all goes according to plan, Naia's plum-sized heart will be stopped, her blood will be circulated by machine, her breathing will be done by mechanical lungs. Her chest will be sawed open, and her malformed heart will be rebuilt to support her growing body.

And, barring a catastrophe, her life will begin anew.

It is March 31, 1999, the day of the surgery Tierney Temple-Fairchild and Greg Fairchild knew would be needed ever since they decided eight months ago to bear a child with Down syndrome and a major heart defect.

For a few difficult days last summer, fears that the heart problem was a death sentence made them strongly consider abortion. They went ahead with Tierney's pregnancy only after learning that the odds of successful surgery were good.

Now, as they watch Bonnani walk away with Naia, all they can do is wait, and wonder, and pray they made the right choice.

"She'll be OK," Tierney says to no one in particular.

"She'll be OK," Greg repeats, wiping his eyes.

Last night, Greg's mother, Mary Fairchild, gave Naia a leisurely bath, letting her splash around on her stomach as though she were swimming. Tierney gingerly clipped Naia's fingernails and placed her in a battery-powered swing.

Before Naia fell asleep, Tierney read to her from a children's book of prayer. On one page was a pastel drawing of a little bear in bed, a blanket pulled up to her chin. Next to it was the "When I'm Afraid Prayer":

"I'm scared, God,

So please help me,

And keep me in your care.

I always feel much safer,

Just knowing you are there.

Amen."

Then Tierney tucked the book into Naia's cradle and kissed her goodnight. Greg came over and did the same.

With surgery just hours away, Naia was the only one who slept peacefully. Greg sat bolt upright at 3:30 a.m., having dreamt that they overslept and missed the operation. Tierney awoke three times just to check the alarm. It was working fine.

They dressed at dawn and arrived at the hospital at 6:30 a.m. A half-hour later they settled into the preoperation holding area, a hive of activity among doctors, nurses, and parents.

While the adults scurried around, most of the children remained quiet -- little ones in cribs, big ones in beds -- all wearing hospital gowns adorned with cartoons of Bugs Bunny and Tweety Bird. One father rode his toddler son around the room on a miniature all-terrain vehicle. The mother sat on the boy's bed, trying to muster a smile. Her sad eyes made an unavoidable point: For all the effort to make it seem like a children's playroom, there is no denying the fear here.

Twenty-six children are scheduled for operations today. "For the most part, they're healthy kids coming in for day surgery, pretty minor stuff," said nurse Fran Macoomb.

Naia, facing major open-heart surgery, is the exception. She is also the smallest child in the room. Though more than four months old, she is 8 pounds 8 ounces, smaller than some robust newborns. In fact, Naia is in the bottom 5 percent for growth among children her age with Down syndrome.

At 7:30 a.m., technician Debbie LaBelle came to Naia's metal crib to draw blood, to match her type for a transfusion, and to complete routine presurgery tests. Naia's cries rang through the room as LaBelle tried repeatedly to find a vein. Greg gripped the bars of the crib. Tierney closed her eyes.

When LaBelle finished, Greg sat with Naia in a rocking chair, whispering all the things a father says to a daughter when he's scared and she's too young to understand his words. He held one of her hands. In Naia's other hand was her Elmo doll.

It is 7:45 a.m. when Bonnani arrives, picks up Naia, asks Greg and Tierney to kiss her, then takes her away to Operating Room 3.

It is a 20-by-30-foot room bathed in artificial light. All around are trays of gleaming steel surgical tools covered by sterile blue cloths. There is a bank of flashing monitors, one of which shows Naia's oxygen saturation -- the level of oxygen in her bloodstream. It reads 84 percent. "Normal would be in the 90s. It's a good thing she's here," says Cookie Eckel, one of two nurses assisting Bonnani.

A backlit screen on one wall displays X-rays of Naia's chest, front and side view, taken two weeks ago. To a trained eye, the X-rays reveal an enlarged heart. It's a side effect of Naia's  malformation, called a complete atrioventricular canal defect.

In a healthy heart, oxygen-rich blood and oxygen-depleted blood are kept apart by walls that separate the four chambers. But like the hearts of many children with Down syndrome, Naia's heart has a hole between the upper and lower chambers. Also, it has only one valve, where there should be two, to regulate the passage of blood through the chambers.

As a result of the hole and the valve problem, blood in Naia's heart that is saturated with oxygen mixes with blood that is not. Mixed blood acts on the body like watered-down gasoline in an engine, causing it to sputter and stall. The heart also has to work overtime to supply the oxygen the body craves, adding extra stress to an already weakened system.

Near the X-ray light board is the machine that will breathe and pump blood for Naia during the operation. And right in the middle of the room is a padded table where Bonnani places Naia.

Surrounded by all the equipment, all the activity, Naia seems even tinier than usual.

She lies on her back, naked, content at first to watch Bonnani and the nurses. Eckel briefly pulls down her face mask and kisses Naia on the cheek. "I just can't resist," she says.

But Naia's calm is shattered when Eckel and another nurse pin down her arms for Bonnani to cover her face with a plastic mask, through which flows an anesthetic gas. Naia cries, fighting to get free. "Hey, you are strong," Eckel tells her.

Fifteen seconds later Naia is asleep, a blue pillow supporting her motionless head. Bonnani puts a breathing tube down her throat. He tapes her eyes shut. A nurse inserts a catheter. Warm air is blown over her body to ward off a chill. A pad under Naia's back forces her chest to arch upward, giving the surgeon the best possible angle to work.

"How're you doing, sweetcakes?" Eckel asks Naia. "You sure look comfortable." In fact, she looks anything but.

At 8:02 a.m., in walks Dr. Lee Ellison, pediatric cardiac surgeon. Tall and lean, he wears scrubs, white clogs, and a thoughtful expression. He carries himself with none of the stereotypical bluster of some surgeons. Rather, there is a quiet confidence, a low-decibel voice of authority.

He starts by measuring Naia's bony torso. To guide his scalpel, Ellison carefully draws a four-inch line down the center of Naia's chest.

As he works, a song begins to play on a radio speaker overhead. It's the 1960s hit, "Never My Love."

There are now nine people in the room with Naia: Ellison, Bonnani, and a second surgeon, Dr. Chester Humphrey; one scrub nurse; one circulating nurse; a nurse anesthetist; one physician's assistant; and two technicians who run the pump machine that will keep Naia alive while her heart is immobilized. They move quickly in pairs and threes.

Just before the operation begins, Ellison paints Naia's chest with brown antiseptic liquid, then covers her with blue cloths. Only a candy bar-sized patch of skin on her chest is exposed.

At 8:44 a.m., Ellison makes the incision. He takes pride in making a particularly fine line, especially on girls. The scar, in time, will become almost invisible.

The incision made, the blood wiped away, Ellison takes a small power saw and cuts through Naia's breastbone.

While Ellison works, Greg and Tierney take refuge in the hospital cafeteria. It's a round room with 40-foot walls painted to resemble a fantasy galaxy of planets and stars. One of the painters was a Star Trek fan; a tiny Starship Enterprise soars through space in an inconspicuous spot.

They talk about the weather, the war in Kosovo, the coffee, the sunlight that pours through the cafeteria's glass ceiling. But now and then, the conversation turns back to a recent discussion about Naia's future if the surgery goes as hoped.

Lately, Greg has been thinking that as prenatal testing becomes more routine, and as the tests become more sophisticated and less risky, the number of people with Down syndrome will fall. The prospect worries him.

"There's safety in numbers," he says. "When there are other children in the school system who are different, when Naia isn't the only one, it makes it easier in terms of advocacy."

Greg also wonders if advances in genetic therapy might eventually allow doctors to remove or repair the extra chromosome that causes Down syndrome.

"As I sit here now, I'm not sure I'd want that," he says. "I'll bet money that 12 years from now if someone walked up to me and said, `Would you change who Naia is?' the answer would probably be no. Part of what I love about Naia might be directly related to the fact she has Down syndrome."

Yet Tierney is intrigued by the idea of correcting genetic flaws while a baby is still in the womb.

"In the papers last week there was a story about a child who had spina bifida corrected to some extent in utero," she tells Greg, referring to the debilitating spinal disorder. "If it's fixable, then why not? Why wouldn't we want every opportunity for everything to go right?"

"It's not that I wouldn't appreciate Naia for exactly who she is," Tierney adds. "But it could become similar to whether or not my child has polio. Of course you'd fix that."

Greg agrees, as long as nothing changes the Naia they love.

At 10:50 a.m., a woman with a familiar face enters the cafeteria, smiling and heading toward their table. It's Karen Mazzarella, the cardiology nurse who eight months ago spoke the first encouraging words about their unborn child's prospects. She arrives with an update from Operating Room 3.

"Everything is going fine. Smooth as silk," she says. "You always like to have a very dull surgery."

Greg's shoulders relax. Tierney sighs. They touch hands. There's a long way to go, but signs are good.

At that moment Naia's grandmothers enter the cafeteria. Greg's father, Bob, is en route from Virginia. Tierney's father, Ernie, is home in New Hampshire. He offered encouragement by phone two days ago, but he won't be coming.

When they hear Mazzarella's report, Mary Fairchild and Joan Temple bask in the news, making grandmotherly plans for Naia's future. First, though, Joan voices mock frustration with her granddaughter.

"I didn't get my kiss from Naia this morning," she says. "I want to get it."

After sawing through Naia's breastbone, Ellison carefully spreads it apart to expose the pericardium, a leather-like sac that surrounds the heart. With a practiced hand, he cuts through it, setting aside a piece the size of a half-dollar for use later during internal repairs.

With the calm that comes from 25 years of holding life in his hands, Ellison prepares to put Naia on the heart-lung machine.

He inserts plastic tubes with metal ends into the veins that bring blood to her heart. The blood is diverted to the heart-lung machine, where it is oxygenated then returned to Naia's aorta for distribution to her body, bypassing the heart altogether.

Throughout the operation, Ellison and his team take care to prevent air from entering Naia's circulatory system. Even a tiny amount could travel to her brain and cause a paralyzing stroke.

Ellison's next step is to stop Naia's heart, so he doesn't have to work on a moving target. He injects a solution into her coronary circulation system that paralyzes the muscle. At the same time, he cools Naia's heart with ice.

The maneuvers work; Naia's heart grows eerily still. In precise medical jargon, Ellison calls it "an excellent cardiac arrest." In any other circumstance, it would mean death.

Now, 20 minutes after the incision, the only thing keeping Naia alive is the heart-lung machine. In addition to its work as a pump, the machine cools Naia's blood, lowering her body temperature to 82.4 degrees Farenheit. Just as people can survive relatively long periods at the bottom of a frozen pond, the cold brings Naia's system to the point of suspended animation, limiting the risk of brain damage.

His preparations complete, Ellison begins his repairs by opening Naia's heart. He cuts through the right atrium, the chamber where depleted blood enters the heart to begin the process of being saturated with oxygen and pumped to the body.

Through tiny magnifying lenses attached to his glasses, Ellison peers inside. With the blood drained and the beating stopped, he can clearly see the hole in Naia's heart.

To fix it, Ellison cuts a piece of white Dacron cloth to roughly the size of a Chiclet. That's how much he needs to patch the lower half of the hole, between the left and right ventricles.

He sews the Dacron patch into place, then picks up the piece of Naia's pericardium that he had set aside. With it, he patches the upper half of the hole, between the left and right atria.

As he sews each patch into place, Ellison uses deft suturing techniques to convert the single large valve Naia had at birth into two separate valves, each of which must open and close thousands of times each day.

As the internal repairs are nearing completion, Ellison begins warming Naia's body. Then he sews closed the heart and allows blood to return. He watches proudly as the rebuilt muscle grows pink with warm blood. It shivers for a moment then starts to pump on its own, quickly falling into a normal rhythm.

Ellison's next concern is whether the hole is closed and the new valves work properly. He tests with an echocardiogram, a machine that uses sound waves to monitor heart function.

It shows that Naia's hole is closed completely. However, as Ellison suspected, the rebuilt valves allow a small amount of blood to flow backwards from whence it came. Ellison calls it a "trivial leak" that won't affect Naia's recovery or health.

Overall, Ellison is satisfied, calling it "an excellent result." He believes there is little chance Naia will need future heart surgery.

Ellison sutures closed the pericardium, then uses stainless steel wires to rebuild Naia's breastbone. Then he sews her skin back together, taking care to make the scar as straight and small as possible.

At 11:35 a.m., while Ellison is still patching and sewing, Greg, Tierney, and their mothers move from the cafeteria to a waiting room near Operating Room 3.

Toys are scattered around, along with poignant memorials to children who didn't survive. A wall plaque is engraved with a lost child's name and a passage from a favorite children's book: "In memory of Jason Michael Cianci. Love you forever, love you for always. As long as I'm living, my baby you'll be."

As they wait, no one mentions the memorials. The grandmothers chat about how wonderful Naia is. Tierney recounts the first stroller ride she gave Naia, only last week, when the weather warmed enough to risk taking her outside. Greg says little.

At 12:55 p.m., Ellison walks in. Everyone stands. He smiles.

"She's all done," the surgeon says warmly. "We did exactly what we talked about, and so far everything looks just right." He explains her need for a blood transfusion and more sedation, describes the breathing tube still in her throat, and mentions that the rebuilt heart valves show small signs of leakage.

All Tierney and Greg hear is that their daughter is OK.

"That's great," Greg says. The tension drains from their faces, their bodies. They embrace.

"Yay for Naia!" Tierney calls out. "Naia the great!"

As he leaves, Ellison turns and warns them not to be alarmed by how Naia looks. "Just treat her like you're at home," he says. "Just smooch her."

A  half-hour later, Naia's parents and grandmothers are escorted to Room 306 of the pediatric intensive care unit.

Naia lies on her back, motionless, her eyes closed. She has lines attached to all four limbs, her torso, and her head. She looks like a crumpled marionette.

A breathing tube brings air to her lungs. A drainage tube removes blood from her chest. An intravenous line supplies nutrition to her depleted system. A nasogastric tube is in her nose for future feedings. A catheter takes away her urine. An arterial line in her wrist checks her blood pressure. A pulse oximeter measures the oxygen level in her blood. It reads 96 percent, just where it's supposed to be.

It makes them cry to see her like this. Greg fingers Naia's fine hair. Tierney follows doctor's orders and kisses her.

A nurse, Wendy Lord, comes in to check Naia's pupils and adjust the monitors. Mostly for modesty's sake, she puts a doll-sized diaper on Naia. Lord wears a Black Dog T-shirt, the unofficial symbol of Martha's Vineyard. For Greg and Tierney, it sparks rueful memories of the day last summer when an ultrasound test changed their lives, just hours before they planned to leave for a Vineyard vacation.

Nurse Cookie Eckel comes by to see how Naia is doing. "She's one feisty little lady," Eckel tells Greg and Tierney. Eckel says the surgery was flawless, and necessary. "She had a big hole in there. You got your money's worth."

Greg and Tierney can't help but smile.

Eckel leaves and Tierney's mother takes care of her unfinished business. Tears streaming down her face, Joan bends low and kisses Naia on the forehead.

"Grandma loves you," she whispers.

It is April 4, Easter Sunday, four days after the operation. Naia's recovery has gone slowly.

She's still in the pediatric intensive care unit, two days longer than Greg and Tierney expected. She'll be here at least one more day, breathing with help from a ventilator. She's fighting a fever, and her blood pressure is low. She remains sedated with morphine.

Naia has resisted attempts to get her to breathe on her own. When the doctors turn down the respirator -- hoping her own breathing system will kick in -- she barely responds. Today, though, they hope to wean her from the respirator entirely.

The day begins with a visit from a nearly six-foot Easter Bunny who leaves a basket of toys and a blue-and-yellow quilt sewn by Girl Scout Troop 988. Naia sleeps through the visit.

At 11:30 a.m., Ellison removes the drainage tube from Naia's chest. Then, at 4:30 p.m., he returns to remove the breathing tube. Naia is deep in a morphine-induced sleep.

Greg and Tierney expect Naia to scream when the tube comes out, but there is only silence. They fear the worst. "It's like her birth, when she didn't cry," Tierney says.

Ellison calms them, telling them to "look at the big picture." In fact, though she remains asleep, Naia has begun breathing for herself.

As the hours drag on, Naia confounds expectations and continues to sleep. The doctors order an antidote for the morphine, called Narcan, and she finally begins to stir. Then she starts to thrash, pulling at the tubes in her nose and on her foot. After a few scary moments, she settles down.

At 11:30 p.m., Greg and Tierney go to a nearby parents' room for a dinner delivered by her mother. Like the Thanksgiving after Naia's birth, their Easter dinner is another holiday meal eaten in the sanitary confines of a hospital. Exhausted, they quietly savor lamb, Swiss chard, mashed potatoes, and black olives, a family favorite.

The days go slowly. A planned five-day stay stretches to 10. But with the extra time and extra care, Naia's strength gradually begins to return.

Now, on April 9, it's time to go home.

Greg and Tierney are buoyant. Naia is snuggled in pink-and-green pajamas. There is something different about her.

It's partly the silky ribbon a nurse has tied to a lock of her hair. And it's partly the smiles she showers on passersby like rice at a wedding. Most of all, though, it's her coloring.

Now that her heart is working well, Naia's skin has taken on a healthy glow. It's not the white of her mother, nor the black of her father. It's not the yellow of jaundice, nor the blue of heart failure, nor the pink of a photo clerk's baby ideal.

It's her own unique color.


Article list

Life with Naia

December 10, 1999

Last of six parts

His basket filled with food and diapers, Greg ambles toward the Stop & Shop checkout line. The store isn't crowded, and he could choose any line. But he is drawn to one in particular.  He places his groceries on the moving belt and looks past the cashier to a smiling young woman.

"Hello," Greg says, and the young woman looks up from her work as a bagger."Hi," she says sweetly.

Greg wishes he could tell her all the things in his heart. He wishes he could ask a hundred questions about her life, her job, her family. About the friends he hopes she has. He wishes he could tell her about his 6-month-old daughter at home.

He says none of that. It would seem odd, intrusive. When her work is done and his groceries are neatly packed, Greg says, "Thanks." He gives her a warm smile. She smiles back.

The bagger's name is Sarah and she has Down syndrome.

It is June 3, 1999. After all the uncertainty, all the fears, all the medical problems from an emergency birth through open-heart surgery, Greg Fairchild and Tierney Temple-Fairchild have begun settling comfortably into life with Naia.

Still, a day rarely goes by that doesn't include reflections on the choice they made. Not that there are doubts. Greg's grocery store encounter merely reinforces his and Tierney's certainty that they made the right decision 10 months ago about carrying Naia to term.

"In retrospect, it doesn't seem like a big deal. This hasn't crushed us or demolished our relationship or affected anybody in our family in a negative sense," Greg tells Tierney.

"It felt really nice to see she's not closeted in a facility someplace. She's out working, in a productive way, as a member of society," he says of Sarah. "Maybe this is evidence that the days when you didn't see any adults with Down syndrome in the community are at their end."

They know there will be unforeseen problems ahead, obstacles that cannot be corrected by doctors, prayer, effort, or time. But with Naia growing stronger, more active, and more inquisitive every day, Tierney is equally undaunted.

"It's important for us to have high expectations," she says firmly. "I'm preparing myself that there will be developmental delays. It's our job to help Naia through her challenges. How well we do that will determine how she pursues life as an adult."

For all their willingness to tackle the hard work ahead, Tierney and Greg know it's too early to predict how independent Naia might be. It will be years before anyone can fully gauge how the extra chromosome in every one of her cells will affect her mental and physical development.

And yet, there are reasons for optimism.

Two months have passed since the surgery that repaired Naia's damaged heart, and the results are as visible as the tender rolls of fat that have sprouted on her once-frail body.

In addition to the high-calorie formula she still drinks, Naia has begun eating mushy cereal from a spoon. Soon she'll graduate to squash and mashed carrots. She has the energy to laugh more often, and with more vigor. On the other hand, her cries are no longer the weak mews of a kitten. When she's upset, they're full-throated yells.

With each passing day, Naia seems to come more into her own as an individual. She has begun playing a flirtatious game of peek-a-boo with visitors, staring at them until they make eye contact, then quickly turning away. She has begun rolling over and using her pudgy arms to propel herself forward while on her stomach. She uses this precrawl to pursue her new favorite diversion: Onyx the poodle. She's too fast for Naia, but she won't be for long.

Naia's developmental leaps are partly traceable to state-funded visits from therapists with Connecticut's Birth-to-Three System, which provides early intervention for children with disabilities. Similar programs exist in Massachusetts and many other states.

Mary Halloran, a developmental therapist, has been thrilled by Naia's performance during their weekly sessions. "Naia is doing beautifully," she wrote on a May 9 progress report. "Today she rolled, played with her feet and played with her hands at her midline. She's experimenting with sounds and is very aware of what's going on around her."

Between visits, Greg and Tierney supplement the work being done by Halloran, occupational therapist Wilma Ferkol, and physical therapist Bonnie Herrin. They do exercises to improve Naia's mobility and strengthen her muscles, which aren't as taut as they should be.

"It might just be that's what parenting is all about, for us or for anyone with children. There's always something else to be working on with your kid," Greg says. "It's not that we're going to be able to work our way out of these deficits, but we'll do whatever we can to be further down the road."

The improvements extend to Naia's medical outlook. Tierney's little brown notebook has taken on a decidedly different tone.

When cardiologist Harris Leopold listened to Naia's heart on May 14, he said, "Sounds good." Tierney happily wrote that down. Two weeks later, gastroenterologist Jeffrey Hyams examined Naia for lingering signs of jaundice. "Looks great," he said, and Tierney wrote that down, too.

One by one, the medicines that once sustained her become unnecessary. By her first birthday, she will need just one, Captopril, which lowers her blood pressure, making life easier for her rebuilt heart. And just as cardiac surgeon Lee Ellison intended, the scar on Naia's chest is fading to a faint white line.

That isn't to say Naia will be free from medical concerns. Sight and hearing problems are common among people with Down syndrome; Naia might need glasses by the time she turns two. More ominously, children with Down syndrome are 15 to 20 times more likely than other children to develop leukemia, and more than 25 percent of adults with Down syndrome develop Alzheimer's-like symptoms of dementia after age 35.

But overall, almost from the moment Tierney and Greg brought Naia home after surgery, their focus has changed. No longer fearful about Naia's survival, they are introducing her to the world. After being kept safely inside nearly all winter and early spring to avoid potentially deadly colds, Naia has become a girl about town, visiting parks, stores, restaurants, and the homes of family and friends.

Naia's public appearances prompt regular cries of "What a cute baby!" from strangers on the street. In the parking lot outside a bagel store, one woman goes on at length about how beautiful she looks in brown. "What a wonderful skin tone she has!" the woman says. Greg smiles. "Thank you," he says.

Some people notice Naia's petite size and ask if she was premature. Rarely does anyone ask about Down syndrome. Some may wonder about it and not want to seem impolite. But Greg and Tierney suspect some people either don't realize she has the disorder or think she has only a "mild" case.

Even Naia's pediatrician, Dr. Della Corcoran, wonders aloud during one visit if Naia might have a rare, less severe form of Down syndrome called Mosaicism, in which not all cells are affected by the extra chromosome.

"No," Tierney told the doctor. "We've had it tested. She has full-blown Down syndrome."

"Well, she doesn't look it," Corcoran said.

In fact, the facial features common among children with Down syndrome are somewhat more subtle on Naia. For instance, her eyes don't slant sharply upward, and they don't have pronounced skin folds at the inner corners. Her tongue only rarely juts out of her mouth, unlike some children with the disorder whose mouths are small and whose jaws are slack, giving their tongues the appearance of being large and protruding.

There's no link between the severity of Down syndrome-related features and the extent of a person's mental retardation. However, Greg and Tierney believe the less Naia exhibits those features, the less discrimination she might encounter. The notion leaves them with mixed emotions.

"I know she's cute, and I think she would probably be just as cute if she had those features. But would she?" Tierney says. "Would she be as cute to other people? I don't know."

Greg sees the issue through the prism of race.

"It's like the difference between being a visible minority versus an invisible minority. I have no doubt that people who don't like black people will let me know very quickly, one way or another," he tells Tierney. When that happens, he reacts accordingly, deciding whether to steer clear or confront them.

"But when you're part of an invisible minority you don't always have that knowledge of where they stand, and that's not always an advantage," he says. "People might have unreasonable expectations of Naia, based on her appearance. When they talk to her and find out about her condition, they'll have to readjust, and that might be difficult, for her and for them."

With Naia's medical crises resolved, Greg and Tierney decide it's time to formally include her in their spiritual lives.

And so, on June 12, an idyllic day that holds the promise of summer, Naia and her family drive to the Church of Saint Timothy in West Hartford for Naia's christening.

They don't worship regularly at the parish, but the choice is both appropriate and symbolic. Tierney and Greg had come here last July, two days after learning about the problems facing the fetus in Tierney's womb. As they sat together that Sunday morning, sad, frightened and confused, they heard a sermon about prayer and miracles.

Only now can they fully appreciate the message.

"Naia is a miracle just as she is," Tierney tells Greg, her eyes welling up. "That's something I feel every day."

As they walk from the parking lot to the church, Naia lets out a stream of happy gurgles. Angelic in a white satin dress with puffy sleeves and a scalloped hemline, she stares at the trees and sky. Nestled in Tierney's arms, she plays with her feet, tugging at tiny green-and-white rosettes on her socks.

Naia's godfather will be Kyle Rudy, a friend from Tierney and Greg's days working at Saks Fifth Avenue in New York. Naia's godmother will be Tierney's sister Tara, whose initial doubts about continuing the pregnancy have been replaced by heartfelt support and endless shows of affection for her niece.

Inside the church, Greg holds a white candle, Tierney holds Naia, and the Rev. Henry Cody blesses her with sacramental oil and water. "She is now called a child of God, for indeed she is," says Cody, who has known Tierney since she was small.

Cody reads from a prayer book that seems written just for Naia. "The parents have generously invited the child into this world by giving a share in the life of their own bodies," it says. "This invitation will be prolonged with every mouthful of food, every drop of medicine, and every inch of shelter they provide."

Naia's grandmothers take pictures. Greg beams. Tierney cries, for joy.

Just when life seems to be calming down, Greg, Tierney, and Naia are forced to confront an unexpected new challenge.

It's June 23, and Greg and Naia are relaxing in their apartment, waiting for Tierney to come home for dinner. Since March, Greg's mother, Mary Fairchild, has been living in the nearby apartment they purchased shortly before Naia was born. Mary and Naia spend most days there while Tierney goes to work and Greg writes his doctoral dissertation.

At 5:30 p.m., the phone at Greg and Tierney's apartment rings. It's Mary.

"Greg, the back porch is on fire," she says before running outside.

A spectacular fire has engulfed a six-story factory building down the street. Embers from the blaze have taken flight, landing on the building housing Greg and Tierney's future home.

No one is hurt, but the new apartment is destroyed, much of it from smoke and water damage. They also lose their good stroller, a baby swing, a playpen, and lots of toys, as well as a computer and several pieces of furniture.

Most of the losses are covered by insurance, but it will take nine months to rebuild. Mary is returning next week to her home in Virginia, and Greg, Tierney, and Naia had planned to move into the new apartment next month. The lease on their current apartment is expiring and cannot be renewed.

They'll have to move in with Tierney's mother, in nearby Avon.

"Last July we found out about Naia. Then the emergency c-section. Then the heart surgery. And now this," Tierney says with a rueful laugh. "I'm at the point now where I think we could handle just about anything."

In a way, she tells Greg, maybe all the trials have been a good thing.

"We've learned that we really are the people we thought we were when we married," Tierney says. "Sometimes it takes a long time to learn how you'll react together in a crisis. I think it's safe to say now we know exactly who the other one is, how we'll react together, how we'll work it out."

For Greg, the key to their future is the way they worked through the decision about Naia.

"Some couples could go through something like this without ever having really agreed," he says. "One person forced their will and the other capitulated. That wasn't the case with us.

"You learn quickly that as long as you're right with the person you're with, even if other people around you don't agree with what you're doing, it's OK. They can hop off the train, because we're going on without them."

In the months ahead, that sentiment will be put to the test, in the form of a confrontation with Tierney's father.

As summer turns to fall and Naia's first birthday approaches, Greg and Tierney are increasingly troubled by Ernie's continued standoffishness. He sends gifts, but during his visits he remains distant from Naia. He still hasn't held her.

It's a sharp contrast from Greg's father, Bob, who gravitates to Naia whenever he sees her, hugging her, playing with her, letting her tug on his beard.

Tierney and Greg's frustration reaches a boiling point when Ernie's girlfriend casually mentions during a phone conversation that he's bouncing her grandson on his knee. They wonder why he doesn't do that with Naia.

On Ernie's next trip through Hartford, on Oct. 20, Tierney asks him that question over pizza at a Bertucci's restaurant.

"I just want to understand what you're willing to do, how involved you're willing to be, how you're going to interact with Naia," she says. "I want to know what your issues are with her."

"I thought they should have been apparent to you," Ernie answers flatly.

It's not the Down syndrome, Ernie says. It's race, the same problem he had a decade ago when he first met Greg. Despite having walked Tierney down the aisle at her wedding, despite the good times he has shared with Greg and Greg's parents, Ernie still disapproves of interracial marriage.

He considers it a betrayal of Tierney's heritage, and his discomfort colors his relationship with his granddaughter.

Tierney is shocked and saddened, a bit sickened as well. Yet she keeps her tone level and tries to point out the illogic of his words, the hypocrisy of his behavior. She uses reason and science to contradict his points, including his suggestion that mixing races might cause physical problems or "sickness," a comment Tierney takes to mean Down syndrome.

But she knows there's no convincing him, and she'd rather be back home with Naia and Greg than hear any more of this.

When he hears about the dinner, Greg is disgusted and shocked by Ernie's comments. "This guy has done such a good act around me, my parents, that I thought maybe he had gotten over those views. I feel duped," he says.

At the same time, Greg and Tierney see the bitter irony: Naia is a victim of garden variety discrimination. Ernie would reject any child of theirs, not just one whose genetic disorder once made them consider abortion. Perhaps the "tragedy" Ernie had envisioned last summer had nothing to do with Down syndrome.

In a phone conversation nearly a week later, Tierney spells out a set of new rules to her father. "I can't have my daughter in an environment where she is going to be discriminated against, especially by her grandfather," she says. "If you can't tell me how long it will take for you to warm up to her, then I have a problem."

Two days later, Ernie calls back with an apology. He was too blunt, cruel even, and the comments he made at Bertucci's don't reflect how he really feels, he says. He might not agree with Tierney's choices, but he says he will respect them.

"Respect is absolute," Tierney says. "It's black and white. It's not gray. If you want to have a relationship with us, what's most important is that you respect my child, and that you demonstrate that with your actions."

Ernie says he understands. Tierney and Greg, hurt by his words and protective of their daughter, are skeptical. But they will give him a chance, knowing that only time will tell.

It's Sunday, Nov. 21, Naia's first birthday party. Tierney has baked a cake using her grandmother's recipe, and Joan's house is awash in presents. There's plenty to celebrate.

This week, Naia received an encouraging one-year assessment from the Birth-to-Three therapists. "Naia's strength has improved greatly over the past few months," it says. "She visually explores and takes in much of what is happening in her surroundings. . . . Naia is a very friendly little girl who greets her visitors with a broad smile and vocalizations, often `hi.' "

Even better, for several months she's been calling Greg "da-da." And just days before her party -- at long last, as far as Tierney is concerned -- Naia looked to her and said, "ma-ma."

Still, there are signs of developmental delays. The therapists estimate she is at the level of a 9-month-old in terms of gross motor skills; a 7- to 8-month-old for fine motor skills; and a 10-month-old for "expressive language."

More upbeat is Naia's one-year medical report. After routinely depressing visits to doctors early in Naia's life, this one is remarkably different. Greg goofs around, wearing Naia on his head like a hat. Naia laughs, pulling his hair. Then Corcoran, her pediatrician, bursts into the room with outstretched arms and a hearty "Happy Birthday!"

Corcoran says she's "astounded by Naia's development," including Naia's newly acquired ability to pull herself to a standing position, a precursor to walking.

"If I didn't know she had Down syndrome, I wouldn't make a referral to Birth-to-Three," Corcoran says. When Tierney suggests that Naia's progress is probably a result of the therapy sessions, Corcoran says there's more to it.

"This isn't Birth-to-Three. This is Naia," she says.

Adding to their delight, Naia weighs 17 pounds 10 ounces, and is 28 1/4 inches tall. She has gained nearly 12 pounds and grown more than 10 inches since birth.

This baby who flirted with death, who arrived for surgery eight months ago near the bottom of the Down syndrome growth chart, has made a stunning reversal. She is now in the 50th percentile for weight and the 75th percentile for height among children her age with Down syndrome. Naia has even grown her way onto the standard growth charts; she's on the low end, but she's there.

As they look back over the past 16 months, Tierney and Greg remember the painful knowledge gained from prenatal testing. But now that pain has been replaced by pleasure. When they think about the summer of 1998, there's a sense of confusion, a shared bewilderment: "How could anybody not want Naia?"

Still, they are grateful to have learned about Naia in advance. "The diagnosis she got in utero is exactly what happened," Tierney says. "Being prepared for her to have special needs allowed us to adjust our expectations, to deal with the grief and to reach acceptance. When she was born, we were ready. We were ready to celebrate Naia."

As the birthday party gets under way, Naia positions herself in the midst of her presents, pulling at the shiny wrapping paper and taking an occasional lunge at Onyx the poodle. Using the couch for balance, she pulls herself to a standing position.

Tierney and Tara stand close together, wearing their matching "hope" necklaces. Lately, Tierney hasn't worn hers quite so often. She has traded hope for something more concrete, an amber locket that opens to reveal tiny photos of Greg and Naia.

She soon might have to buy a bigger locket: Tierney and Greg have begun making plans for another child. They hope Tierney will be pregnant again by spring.

Greg takes Naia's hand, and she lets out a squeal of "DA-DA!" She takes one tentative step, then another.

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