Mitchell Zuckoff, The Boston Globe
Posted 5/31/2000 12:00:00 AM

Mitchell Zuckoff
The Boston Globe

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

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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 normallyflat 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 lasttask before a weeklong vacation on Martha's Vineyard.

The technician, Maryann Kolano, strokes Tierney's belly witha sonogram wand, using sound waves to create a picture of the life inside. Gregstudies the video screen, fascinated by the details emerging from what lookslike 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 stopsthe moving image, capturing a vivid cross-section, and Greg remembers his highschool biology.

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

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

The inescapable truth is staring at Tierney and Greg from thesilent screen: There is no fourth chamber. There is a hole in the heart. Andnot 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 theirown.

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

Most disorders tested for today -- including Down syndrome, musculardystrophy, and cystic fibrosis -- cannot be corrected. That means the most commonquestion prompted by distressing prenatal test results is not, "How can we fixit?" 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 humandevelopment -- the genetic code that acts as the operating instructions for creatinglife. That achievement is expected to drive prenatal screening into the realmof science fiction. Then what? Does a woman carry to term a baby susceptibleto mental illness? Cancer? Obesity? Infertility?

Already, hard science has far outpaced the emotional side ofthe equation. People can learn a great deal about their unborn children, butno 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 andsometimes ill-informed voices of Tierney and Greg's family and friends. Somewill urge abortion -- the choice made by up to 90 percent of people in theirsituation -- 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 reachthe stage where abortion is illegal except to protect her life or health, neitherof which is at risk.

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

The morning of the ultrasound test dawnedwith a cloudless pastel sky, custom-made for a couple on course for an enviablefuture.

Tierney is 31, as smart as she is attractive, with shoulder-lengthbrown hair, large expressive eyes, and an effervescent laugh. She has a doctoratein education from the University of Virginia, where she also received an MBA.Four years out of school, she works in the corporate contributions departmentof 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 ofVirginia, and is now writing his dissertation for a doctorate in business fromColumbia University in New York, where he spends several days each week. Thedissertation topic: small business in the inner city.

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

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

A first ultrasound, in late April, showed a healthy fetus duearound Dec. 7, Greg's birthday. A second prenatal test for birth defects, calleda triple screen, also was negative. In fact, it showed the odds of Tierney havinga child with Down syndrome were unusually low, though the test is accurate onlyabout 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 togo straight from the hospital to Martha's Vineyard, Greg loaded their HondaAccord, filling the trunk with bags, books, and a cooler with $100 worth ofmeat, fish, and a homemade marinade.

Greg picked up Tierney at work at 1:15 p.m. and they drove tonearby St. Francis Hospital. As they walked in, Tierney cheerily mused thattheir next visit would be for the delivery. It seemed fitting and natural: Shewas 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 machineand drops the first shoe: "We're only locating three chambers," he says in avoice that reveals only information, not emotion. He asks them to move two doorsdown, 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 herhand and says softly, "Stay calm. It's going to be OK. There's not anythingto worry about yet."

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

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

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

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

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

Egan explains he will insert a needle into Tierney's uterusand withdraw a small amount of fluid. Because the fluid contains cells fromthe fetus, doctors can diagnose Down syndrome with near-certainty by analyzingthe 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, sayingit would only upset them both, and they still don't know what they're dealingwith.

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

Greg and Tierney, still trying to absorb the news, wonder whatshe 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 ofmiscarriage from amniocentesis.

Tierney feels rushed and confused -- wasn't it just an hour agoeverything was wonderful? -- but through her tears she signs the form. Her bodyshakes 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 harmlesslyinto the uterus and then back out. Greg helps her off the table.

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

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

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

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

They drive home in a fog, punctuated by Tierney's sobs. Gregcarries 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 majorwas special education.

She talks of faith and holds back the tears she wants to shedfor her first grandchild. "You have to face the situation," she explains. "Ifyou 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 substituteteacher who lives in Avon, Conn. A devout Catholic, Joan tells them, "You needto relax and not think the worst. Remember, it's God's plan." Privately, shewill be praying that a miracle heals her first grandchild. Tierney's parentsare divorced. Her father, Ernie Temple, won't be told for another 11 days.

The last call is to a genetic counselor, Alicia Craffey, whowas 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 hoursabout everything and nothing, then fall into fitful sleep. Overnight, the icein the cooler melts. The food left abandoned inside turns rancid.
 

In the morning, Greg awakens in a dark mood. It is the firstof many back-and-forth flips both will make in the days ahead.

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

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

He remembers, as a child, watching other boys taunt a mentallyretarded 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 thatrole.

He tells his parents he remembers volunteering as a teenagerfor Special Olympics. He was supposed to hug runners as they crossed the finishline. "I remember my own visceral reaction when you see a child with what Iwould call extreme Down syndrome -- very large glasses, bulging eyes, tonguesticking out of the mouth. I didn't pull away, but you don't feel as comfortablereaching over and hugging. Clearly, after you do it, after you hug the firstfive, you find out, hey, there's nothing wrong." Still, his initial responsemakes him wince.

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

After the phone call with his parents, Greg tells Tierney theyface a frustrating future in which they can never stop being vigilant, educatingthe 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 themfor the rest of our lives," he tells her. "Tierney, we're going to have to gointo 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 inthe back of the room or locking him in the closet. This is what we're goingto have to do. But I'm mad about it."

He is leaning toward abortion.

But Tierney has awakened more peacefully. For the moment, herconfusion and sadness have passed with the night. She tells Greg: "We both considerourselves 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 theystill 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 roomcouch.

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

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

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

From the literature, Tierney and Greg also learn that childrenwith Down syndrome are as varied as other children, though they have certainconsistent features. All are mentally retarded, most with IQs between 40 and70 on a scale that considers 100 to be average.

Though often stereotyped as relentlessly happy, they have thesame range of emotions as other children. Most have poor muscle tone, upward-slantingeyes, and faces that are broader and flatter than those of other children. Life-expectancyis 55 and rising. Many have vision problems, and heart defects are common, occurringin nearly half of all children with Down syndrome.

Greg and Tierney learn that surgery can correct the type ofdefect 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 drawnto church. Greg, raised a Baptist, and Tierney, a Catholic, consider themselvesreligious. And yet, they depart from church doctrine on key matters, most notablyabortion rights, which they strongly support.

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

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

From this moment on, there will be no more prayers for the babynot to have Down syndrome. What's done is done, they decide, and such a diagnosismight 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 daysuntil the test results come back, she wants to begin their delayed vacationon Martha's Vineyard. Reluctantly, Greg agrees.

Greg spends the ferry ride napping in the car, too tired anddepressed 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 healingsun. Greg stays holed up in their rented house, slowly coming to terms withwhat 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 backpositive," Bourque says. Chances for a different result are slim, he says, butthe diagnosis won't be final until the amniocentesis results arrive next week.

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

"I was dealing with it and trying to stay strong, and appealingto my better half that I could handle it," Tierney tells Greg. "Now, all ofa 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'ssister Tara joins them on the Vineyard. Her visit unleashes new tensions.

Tara is a year older than Tierney, single, a veterinarian inWorcester. 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 singlependant, 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 architectand former Air Force captain, and his wife Allison, an anesthesiologist. Basedon a discussion of medical information gathered by George and Allison, the threehad 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 theunborn child kicking inside her, but if the heart defect is irreparable, maybeabortion is the right choice. Still, hearing it from Tara is devastating.

When Tierney and Tara reach the rental house, their reddenedeyes are turned from each other. When Tara goes inside, Tierney tells Greg onthe 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 believesTara, 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 seeus as having been pioneers."

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

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

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

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

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

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REACHING A DECISION

December 6, 1999

Second of six parts

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

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

 Greg catches his breath and asks Bourque: "What do peopleusually 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 andTierney Temple-Fairchild got the first hint of trouble during a routine ultrasound.

They returned home last night from Martha's Vineyard, havingspent 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. Georgesat with them on Philbin Beach and subtly pressed his case for abortion. Tierneyand Greg said they were still gathering information, weighing options.

Once back home in Hartford, Tierney and Greg knew they weren'tready 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 explainedonly that "complications" have arisen in her pregnancy. Greg made the same callto Columbia University, where he is a doctoral student and instructor at thebusiness school.

Now, as they sit with Bourque at St. Francis Hospital, theirevery 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 ifthe 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 usefulinformation about Down syndrome, the heart problems, or how to respond. He wonderswhy Bourque doesn't seem to know more.

Tierney, who has known Bourque since she was 19, suspects thedoctor 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? Ishe going overboard trying not to influence us?

They drive several miles to Connecticut Children's Medical Centerto 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 worryis 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 ofchildren who have undergone successful heart surgery. They are babies, littlekids, 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 hischair forward so their knees almost touch. With detailed charts he illustratesthe heart defect, explains its effects, and shows how it would be repaired.

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

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

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

She wonders if Leopold is downplaying the effects of a damagedheart on a child with Down syndrome. She probes for a darker response: "Willthere be some kind of interaction between the two, so having the heart defectwill stunt development and make it even harder for this child?" She asks itseveral 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'tyou believe them?"

"I don't know," she says, the hope that had sustained her ebbingaway. "Maybe it's their job. Maybe they only tell you the good parts becausethis 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 anauthority 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 homestate of New Hampshire. Tierney was in the eighth grade when her parents splitup.

"We've had some bad news about the baby," Tierney begins. Whenshe 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 thatcan 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. Hemeant abortion. She calls him back.

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

Then he shifts focus. "Do you understand the baby is going tobe 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 aboutstate-funded programs that promote physical and mental development among disabledchildren. She mentions it to suggest that there are resources available fortheir 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 totake state money, resources?" Ernie says.

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

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

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

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

Greg and Tierney met while working as managers at Saks FifthAvenue in Manhattan, Greg in the dress department and Tierney in women's coatsand suits. They were recent college graduates, Tierney from the University ofPennsylvania and Greg from Virginia Commonwealth University. Lunchtime chatsevolved into heated debates on politics, society, and race. Romance bloomed.

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

Still, neither Greg nor Tierney considers Ernie racist; Gregsays he is on good terms with his father-in-law, and Ernie has grown close toGreg'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 waslike, you could just stop dating me. And now, he's saying technology can helpus avoid the problem, the discrimination, that comes with Down syndrome."

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

A decision looms, and still Tierney and Greg are shifting positionsrepeatedly.
 

Two days after the talk with Ernie, Greg and Tierney returnto Children's Medical Center to see Dr. Robert Greenstein, a geneticist andauthority on Down syndrome. Greenstein is as encouraging as Leopold was, explainingthe strides being made in helping children with Down syndrome lead full andhappy 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 thechance their child will be in the minority of Down syndrome cases with profoundmental retardation. "Maybe we should do the termination," she says, avoidingthe word abortion. "But I'm really conflicted. Even though I'm feeling goodabout 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 sortsof complications with other children?" he wonders aloud. "What about the youngerchildren being required to take care of their older sibling, possibly for therest of their lives from a financial perspective? Would keeping this child meanwe 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 andMary 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 togo 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 endof the world. All of us are born with defects. If you and Tierney give thischild 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 phonenumbers of people whose children have Down syndrome. The calls yield uniformlyheartwarming stories of prom dates, family vacations, and sleepaway camps, ofjoyful children overcoming obstacles and enriching the lives of their parentsand younger siblings.

There is some talk of financial strain, but -- unlike many prospectiveparents in their situation -- that issue plays little role in Tierney and Greg'sdecision. Both have already made career and educational choices that put personalgoals 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 suppliedby Craffey, Greg calls A Kids Exchange, an organization that helps arrange adoptionsfor 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 matchmakingservice from her home in White Plains, N.Y. "I have a long waiting list forthese babies."

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

She repeats: "No problem."

"OK then," Greg says, "How about finding a home for an interracialchild, 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 thefinal 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 themselvesand 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 addup to abortion. They look at each other and know they have decided: They willhave this baby.

They call it a leap of faith.

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

"Why wouldn't I allow God to take this pregnancy where it needsto go? And if my baby is going to die in heart surgery, my baby is going todie in heart surgery. My dad might say, `Tierney, why do you have to go throughthat, 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 comesand goes. Greg doesn't give it any thought. Tierney has a twinge of doubt, butit passes.

Now that a decision has been made, they have to share it withtheir families. The hardest calls are to Tierney's father and brother becausethey 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 NewHampshire, 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," Gregtells him.

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

"Whether you agree or not with our decision," Greg says, "it'simportant 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 informationhe shared with them was frightening, often wrong, and reflected his personalbiases. George grows defensive, saying he was only trying to help. But in hisown 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 forwardto meeting our new niece or nephew."

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

With the decision made, Greg returns to school. Tierney goesback to work after role-playing with Greg about what to say when people askabout 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 thesituation 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'snothing to be sorry about.

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

Two acquaintances express surprise that it was genetically possiblefor 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 onthe flawed assumption that his and Tierney's genes were incompatible.

In fact, no link to race has been found in the 133 years sincethe syndrome was identified by an English doctor, John Langdon Down. The onlyknown 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 knowledgetheir unborn child's condition was a fluke, a missed signal at conception.

As summer turns to fall, there are baby showers to attend andpreparations 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, butit takes someone special to be a Daddy."

In mid-November, with just weeks until the due date, the nestinginstinct takes hold. Greg and Tierney buy an apartment in the complex wherethey have been renting. It has only one bedroom, just like their unit, but theprice is too good to pass up. "It has a wonderful view of Taco Bell," Tierneyjokes. "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 todeliver, so specialists can be on hand to deal with any emergencies.

The slowed growth renews Greg's fears, which are compoundedby the knowledge that the risk of stillbirth is higher among fetuses with Downsyndrome. It is much too late to change course, so he decides not to share histhoughts 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 wherethe limb ended and where it began. They can't tell us how mentally retardedshe'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 spendthe day and see the new apartment. After her initial doubts, Tara now sees herunborn niece as a blessing and a gift.

Greg plans to make a chicken dinner, but first they have a leisurelylunch at the Prospect Cafe in West Hartford. Greg and Tara talk animatedly aboutwork, 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 copyof the pregnant woman's bible: "What to Expect When You're Expecting." She rustlesthrough the well-thumbed pages, searching for information on fetal movement.

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

---

A DIFFICULT BIRTH

December 7, 1999

Third of six parts

Tierney curls herself up into a fetal position on a hospitalgurney. She is shaking, praying, drawing air with shallow breaths as a doctorinserts a needle into her spine.    Her eyes are wild. As theneedle slides between two bones of her lower back, a strange, piercing sensationshoots down her leg as though she has stepped on a live wire. She feels aloneand 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 ultrasoundforetold her baby's future, her husband's, and her own. The memory makes hershiver 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 emergencydelivery, my baby has all these problems, but there's nothing to worry about."

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

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

Tierney had seen Bourque just four days earlier, and everythingseemed 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 drugstore and bought a stethoscope to listen for a heartbeat. All they could hearwas a gurgling sound, so Tierney called Bourque's office. He told her to drinkfruit juice and eat a candy bar, to see if they could stimulate the baby withsugar.

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

Another call to Bourque prompted action: He instructed her togo 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 clothesstrewn across their bed, scared but fairly certain they'd be home soon.

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

Along with Bourque came an ultrasound machine, which showedthat Tierney and Greg's unborn daughter wasn't moving. The amniotic fluid thatnormally bathes a fetus in the womb had dried up; Tierney's body apparentlyhad 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'dgive her a one for movement," the resident said. On a scale of 10, Tierney andGreg's unborn child was failing badly. The chance of a stillbirth -- alreadyhigher than usual as a result of the Down syndrome -- was increasing with eachpassing minute.

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

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

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

As he waits outside, Greg dons blue-green hospital scrubs andcalls Tierney's mother and sister. After a few minutes, the anesthesiologistpinches Tierney's leg to test if the drugs are working. When Tierney can nolonger 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, likea father lifting a child who has fallen. Bourque pulls from Tierney's uterusa baby covered with the muck of new life.

It is 10:16 p.m. and Tierney Temple-Fairchild and Greg Fairchildhave 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'sphysical attachment to Tierney, but also cutting off the rich supply of bloodthat her own damaged heart cannot provide. If she survives, she will need majorsurgery before she turns one.

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

"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 skinseems 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 thebaby into an adjacent room with Greg following close behind. They suction fluidfrom her nose and mouth. They clean, dry, weigh, and measure her, speaking toher in dulcet tones.

They give the baby a dangerously low score of 2, out of a possible10, 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 comfortsher, praising her for recognizing the danger: "Nice call. You saved your daughter'slife."

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

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

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

But then, the combination of anesthesia and stress catches upto Tierney; she starts throwing up. For the first time, Greg is forced to jugglehis roles as husband and father. He trades the baby for a bedpan, and holdsit 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 intensivecare unit. Greg goes searching for Tara and Tierney's mother, Joan Temple.

When he finds them outside the maternity ward, Greg says, "Youhave a granddaughter. You have a niece." Joan kisses him. Tara grips him ina 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 silentlyamong seven bassinets, four of them containing babies who barely crease thecrisp white sheets.

Around each bassinet is a maze of high-tech machinery and intravenousfeeding tubes, oxygen tanks, and monitors that glow and hum and keep watch likeworried 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 inunison at the baby in the tiny knit cap with tufts of hair peaking out. Theyadmire her long fingernails and rosebud lips.

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

Left unspoken are the doubts about her survival. Her serenecountenance notwithstanding, the baby's bloodstream has a dangerously high levelof acid -- an indicator of insufficient oxygen in her system. She has a frighteninglylow number of platelets, which are necessary to stop bleeding. She will getat least one transfusion in the next two days. She requires supplemental oxygenfrom a tube in her nose. Later, it will come from a transparent tent over herentire 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 goodcry. She shows signs of an infection, though the doctors aren't certain aboutthat.

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

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

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

"Can I touch her?" he asks a nurse. She explains he will needto thoroughly scrub his hands and arms. He wants to, but knowing that Tierneyis 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 feelspleased she realized there was a problem. But she wonders if her active lifestylewas 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 babyhave died?"

Both Tierney and Greg wonder: Will she die anyway?
 

It is after 2 a.m. when they drift off to sleep in Tierney'shospital 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 thelast months of pregnancy puzzling over names, adding and deleting prospectson a list posted on their refrigerator. Both were drawn to unusual names, andsomething 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 cameup with Naia, which they pronounce "Nye-uh." Only later will they learn it ismore 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 evokedthe hymn "Amazing Grace" and had the added benefit of honoring a relative ofher father's who died young. For Greg, it reflected a desire to heal the woundsthat 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 willdo more to raise people, to change people's expectations and beliefs. She providesan opportunity for people to have grace, to mend bonds that were strained."
 

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

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

In a small conference room away from the bassinets, Lapuk elaborateson what Greg and Tierney already know about the heart defect, the low bloodpressure, the lack of pressure in the lungs, the whole array of problems facingNaia.

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 hitthe remote. The door rose while Lapuk watched in astonishment.

Lapuk's younger brother has Down syndrome.

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

Lapuk's story heartens them as Greg pushes Tierney's wheelchairtoward 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 deliveryroom.

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

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

Later, back in Tierney's room, there are three books on a tableby her bed: "What to Expect the First Year," a memoir on race called "Life onthe 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 rollingtable, waiting for a happy moment to record.

For now, the joy at the arrival is tempered by fears about Naia'shealth, 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, itwas tragic for you, and you should have terminated months ago and saved everybodythis huge problem.

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

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

"The baby is doing well enough that she deserves a fightingchance, and she deserves her own opportunity," Tierney says, slumping in herhospital bed. She wears a pink bathrobe over a white nightgown. Around her neckis 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 herown. Yes, she's got some challenges and she might not make it, but this wasthe right thing to do. I'm convinced of that."

Tierney's beliefs were reinforced by the sight of one of theother 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 encouragementto the frail infant. The woman's focus was complete; she never looked up.

The baby's mother was in a car accident that triggered prematurelabor. The baby was born at 26 weeks -- 14 weeks premature -- and weighed just1 1/2 pounds. Tierney realizes that's roughly the same size Naia was when theywere deciding whether to continue or abort.

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

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

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

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

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

It occurs to Tierney their wish has been granted. "I'm reallysupposed 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 enoughto supplement intravenous feedings with breast milk. Until now, Tierney hasbeen using a pump to collect her milk, storing it for later use. On her firsttry at the breast, Naia doesn't take much, and tires quickly, but it pleasesTierney just the same.

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

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

On their way to the intensive care unit, Greg tells Ernie abouthis 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 ifhe 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 sucha fragile baby.

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

Five days later -- Dec. 4 -- Naia has beaten the worst of hermost immediate problems and is ready to go home. She has been in the hospital12 days, eight more than planned.

It's a surprisingly warm December day, with temperatures topping60 degrees and the roses outside St. Francis still showing off their rich redpetals.

Greg's parents, Bob and Mary Fairchild, have taken a train upfrom Virginia to meet Naia and escort her home. Both were firmly in favor ofcontinuing the pregnancy. Now that the baby is here, Mary gives voice to theirhopes 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 howthe world perceives her will be totally irrelevant.

"I know it will be challenging for Greg and Tierney," Mary saysas Bob nods in agreement. "I wish more than anything they could have had thehealthy child they were hoping for. They didn't, and that hurts a lot. But Iadmire 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 emergewith Naia. They are beaming. Just a few days ago they didn't know if she wouldever leave the hospital.

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

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

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

"OK. Now what?" he asks.

"I don't know," Tierney answers.
 

---

STRUGGLING TO GROW

December 8, 1999

Fourth of six parts

Naia latches onto Tierney's breast, her eyes rolling back insleepy serenity, her body more relaxed with each sip of milk.   "Yes.You're a good eater, Nai-nai," Tierney whispers, cradling her baby on theirliving room couch.   Greg is setting the table for a takeout Chinesedinner. A small Christmas tree waits expectantly nearby; snow flurries brushagainst 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 isa tight line. Her eyes are red and her neck muscles dance under the collar ofher white turtleneck. Greg is unshaven, funereal in all black clothing.

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

It is Dec. 14, 1998. Naia is 22 days old and weighs 5 pounds14 ounces, just 2 ounces more than her birth weight.

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

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

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

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

Despite weakness and lethargy, Naia needs to quickly gain enoughweight 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 failbefore she is strong enough for the operation, the surgery itself might killher.
 

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 herchest 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, Tierneyand Greg face difficult new choices.

First among them is whether to end breast-feeding and switchexclusively 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 directlyfrom Tierney.

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

Greg and Tierney want to do what's best, but it seems odd thatbreast-feeding -- usually the best choice for babies -- might be placing Naiaat 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 physicaldisorders of Down syndrome.

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

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

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

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

While waiting to see their pediatrician, Greg and Tierney sitwith Naia in the waiting room and listen to a mother laughingly complain abouthow 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 infrequentoccasions when Tierney and Greg expose Naia to the world, where the winter coldand potential for illness must be avoided at all cost.

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

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

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

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

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

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

Since last week, on orders from her cardiologist, Naia alsohas been taking a heart medication called Lasix. Defects such as Naia's -- ahole 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 improveheart function.

During the examination, Corcoran adds an unintentional insultto 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, calmbut cool. She tells Corcoran the word has negative racial connotations, particularlyin the South, where Greg grew up.

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

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

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

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

Before the tests, Greg and Tierney go to the hospital pharmacyto 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 awayfrom Naia.

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

"Don't worry," Greg says softly, shielding Naia as best he canuntil 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'ssecond floor that is gaily decorated with hanging mobiles and cartoons of Barneyand Tweety Bird. A nurse has trouble finding a vein from which to draw Naia'sblood. Naia screams. Tierney winces.

As they wait for Naia's cries to end, they notice a poem pinnedto the back of the door, placed there by a hospital worker whose son nearlydied. Shoulder to shoulder, Greg and Tierney read its rhyming couplets. Theclosing 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 dominatedGreg 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 aroundthe house. It's long out of date, from March 22, 1997, but they had never readit.

Deep inside Greg notices an article on birth defects and prenatalscreening. 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 tobe 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 percentabort. At last, they have an answer to the question Greg had tried to ask theirobstetrician, 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 lookaround and see what other people have done. But to hear that you're so in theminority. . . .

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

It dawns on Tierney that, based on the 90 percent figure, nearlyeveryone 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 decisionand chose abortion.

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

Tierney smiles and thinks about their decision to marry acrossracial 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 weighs6 pounds 8 ounces. She has gained 12 ounces since birth, 10 in the past threeweeks, 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 timeis growing short. Surgery is needed sooner than expected.

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

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

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

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

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

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

"I'm sorry," he said sheepishly. "I just looked at your complexionand 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 remainsa priority, but her liver problems have begun causing even bigger fears. Thesource 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 typesof jaundice. He suspects it's either a blockage in the tubes that connect theliver to the small intestine, or an inflammation of the liver called neonatalhepatitis.

Hepatitis can be treated with drugs, but a blockage likely wouldrequire 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'sa good chance Naia needs a liver biopsy, a surgical procedure in which cellsfrom the liver are removed for extensive tests and microscopic analysis.

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

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

After days of fear and uncertainty, Tierney and Naia go to HartfordHospital for a procedure in which a chemical is injected into Naia's body thentraced as it moves through her system. If it doesn't pass from her liver toher 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. Shescreams and struggles, but eventually surrenders to sleep. Tierney also succumbsto stress and exhaustion, nodding off in a chair at Naia's side, her head downon the gurney just inches from her daughter's.

When they awake, the technician has the first bit of good newsin what seems like a long time. The chemical passed into Naia's intestine; shedoesn't have a blockage. "Our prayers were answered," Tierney tells Greg whenshe 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 ailmentof 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, andthe jaundice is Tierney's effort to breast-feed. By mid-January she is no longereven 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 fouror 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 theyspoil.
 

Back in August, when Greg and Tierney were choosing to haveNaia, 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, toheal the rift.

On his first visit with Naia, in early January, George stepsinto 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 tellingher it's time to sleep.

"I'm sorry," George tells Greg and Tierney. "I wish I had neversaid anything." They embrace and forgive him.

Ernie, meanwhile, has expressed himself mostly with gifts, sendingNaia a playpen for Christmas along with pants, booties, a yellow sweater, andseveral 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 distancefrom 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 herbirth would be a tragedy.

Ernie's rigidity makes Greg and Tierney wonder if his attitudereflects something more than race, something more than what he said about havinga baby that burdens society and themselves. They wonder if her problems arestirring up painful memories of his own past.

Ernie's only sibling, his younger brother Norman, suffered froma 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 facewas deformed, his nose and eye crushed like kneaded dough.

When Norman was a teenager, a surgeon attempted to repair someof the deformities by sewing his hand to his face. It was one of several painfulattempts 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'sDown syndrome, Ernie made a comment that struck them at the time as strangebut unimportant. It began when Greg asked Ernie if he had any advice or concernsabout 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 ultimatefear," 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. ByJan. 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 defectcontinues to tax her body. Hope that surgery could wait until late spring iscast aside. It will happen by April 1.

In the meantime, despite all her challenges, Naia has been growinginto 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 stuffedred Elmo doll, from Sesame Street. She follows objects with her eyes, particularlyones with bright colors and bold patterns. She sings out in little yelps. Shesmiles 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 arrangeda schedule that will allow her to work from home some days. Greg works at homeon his doctoral dissertation and oversees daytime care of Naia -- with some unexpectedhelp.

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

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

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

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

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

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

---

MENDING A HEART

December 9, 1999

Fifth of six parts

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

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

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

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

Over the next five hours, if all goes according to plan, Naia'splum-sized heart will be stopped, her blood will be circulated by machine, herbreathing will be done by mechanical lungs. Her chest will be sawed open, andher 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-Fairchildand Greg Fairchild knew would be needed ever since they decided eight monthsago to bear a child with Down syndrome and a major heart defect.

For a few difficult days last summer, fears that the heart problemwas a death sentence made them strongly consider abortion. They went ahead withTierney's pregnancy only after learning that the odds of successful surgerywere good.

Now, as they watch Bonnani walk away with Naia, all they cando 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 leisurelybath, letting her splash around on her stomach as though she were swimming.Tierney gingerly clipped Naia's fingernails and placed her in a battery-poweredswing.

Before Naia fell asleep, Tierney read to her from a children'sbook of prayer. On one page was a pastel drawing of a little bear in bed, ablanket 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 hergoodnight. Greg came over and did the same.

With surgery just hours away, Naia was the only one who sleptpeacefully. Greg sat bolt upright at 3:30 a.m., having dreamt that they oversleptand 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 ofactivity among doctors, nurses, and parents.

While the adults scurried around, most of the children remainedquiet -- little ones in cribs, big ones in beds -- all wearing hospital gownsadorned with cartoons of Bugs Bunny and Tweety Bird. One father rode his toddlerson around the room on a miniature all-terrain vehicle. The mother sat on theboy'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 denyingthe fear here.

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

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

At 7:30 a.m., technician Debbie LaBelle came to Naia's metalcrib to draw blood, to match her type for a transfusion, and to complete routinepresurgery tests. Naia's cries rang through the room as LaBelle tried repeatedlyto 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'stoo young to understand his words. He held one of her hands. In Naia's otherhand was her Elmo doll.

It is 7:45 a.m. when Bonnani arrives, picks up Naia, asks Gregand 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 aroundare trays of gleaming steel surgical tools covered by sterile blue cloths. Thereis 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 wouldbe in the 90s. It's a good thing she's here," says Cookie Eckel, one of twonurses 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 revealan enlarged heart. It's a side effect of Naia's  malformation, called acomplete atrioventricular canal defect.

In a healthy heart, oxygen-rich blood and oxygen-depleted bloodare kept apart by walls that separate the four chambers. But like the heartsof many children with Down syndrome, Naia's heart has a hole between the upperand 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'sheart that is saturated with oxygen mixes with blood that is not. Mixed bloodacts on the body like watered-down gasoline in an engine, causing it to sputterand stall. The heart also has to work overtime to supply the oxygen the bodycraves, adding extra stress to an already weakened system.

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

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

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

But Naia's calm is shattered when Eckel and another nurse pindown her arms for Bonnani to cover her face with a plastic mask, through whichflows 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 supportingher motionless head. Bonnani puts a breathing tube down her throat. He tapesher eyes shut. A nurse inserts a catheter. Warm air is blown over her body toward off a chill. A pad under Naia's back forces her chest to arch upward, givingthe surgeon the best possible angle to work.

"How're you doing, sweetcakes?" Eckel asks Naia. "You sure lookcomfortable." 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. Hecarries 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 circulatingnurse; a nurse anesthetist; one physician's assistant; and two technicians whorun 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 chestwith brown antiseptic liquid, then covers her with blue cloths. Only a candybar-sized patch of skin on her chest is exposed.

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

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

While Ellison works, Greg and Tierney take refuge in the hospitalcafeteria. It's a round room with 40-foot walls painted to resemble a fantasygalaxy of planets and stars. One of the painters was a Star Trek fan; a tinyStarship 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 thesurgery goes as hoped.

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

"There's safety in numbers," he says. "When there are otherchildren 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 eventuallyallow 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'llbet money that 12 years from now if someone walked up to me and said, `Wouldyou change who Naia is?' the answer would probably be no. Part of what I loveabout Naia might be directly related to the fact she has Down syndrome."

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

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

"It's not that I wouldn't appreciate Naia for exactly who sheis," Tierney adds. "But it could become similar to whether or not my child haspolio. 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 cardiologynurse who eight months ago spoke the first encouraging words about their unbornchild's prospects. She arrives with an update from Operating Room 3.

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

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

At that moment Naia's grandmothers enter the cafeteria. Greg'sfather, Bob, is en route from Virginia. Tierney's father, Ernie, is home inNew Hampshire. He offered encouragement by phone two days ago, but he won'tbe coming.

When they hear Mazzarella's report, Mary Fairchild and JoanTemple 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. "Iwant to get it."
 

After sawing through Naia's breastbone, Ellison carefully spreadsit 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 ofa half-dollar for use later during internal repairs.

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

He inserts plastic tubes with metal ends into the veins thatbring blood to her heart. The blood is diverted to the heart-lung machine, whereit 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 toprevent air from entering Naia's circulatory system. Even a tiny amount couldtravel to her brain and cause a paralyzing stroke.

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

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

Now, 20 minutes after the incision, the only thing keeping Naiaalive is the heart-lung machine. In addition to its work as a pump, the machinecools 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 frozenpond, the cold brings Naia's system to the point of suspended animation, limitingthe risk of brain damage.

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

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

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

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

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

As the internal repairs are nearing completion, Ellison beginswarming 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 shiversfor 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 thenew valves work properly. He tests with an echocardiogram, a machine that usessound waves to monitor heart function.

It shows that Naia's hole is closed completely. However, asEllison suspected, the rebuilt valves allow a small amount of blood to flowbackwards from whence it came. Ellison calls it a "trivial leak" that won'taffect 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 stainlesssteel 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 OperatingRoom 3.

Toys are scattered around, along with poignant memorials tochildren who didn't survive. A wall plaque is engraved with a lost child's nameand 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'llbe."

As they wait, no one mentions the memorials. The grandmotherschat about how wonderful Naia is. Tierney recounts the first stroller ride shegave Naia, only last week, when the weather warmed enough to risk taking heroutside. 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 whatwe talked about, and so far everything looks just right." He explains her needfor a blood transfusion and more sedation, describes the breathing tube stillin her throat, and mentions that the rebuilt heart valves show small signs ofleakage.

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 alarmedby how Naia looks. "Just treat her like you're at home," he says. "Just smoochher."

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

Naia lies on her back, motionless, her eyes closed. She haslines attached to all four limbs, her torso, and her head. She looks like acrumpled marionette.

A breathing tube brings air to her lungs. A drainage tube removesblood from her chest. An intravenous line supplies nutrition to her depletedsystem. A nasogastric tube is in her nose for future feedings. A catheter takesaway her urine. An arterial line in her wrist checks her blood pressure. A pulseoximeter measures the oxygen level in her blood. It reads 96 percent, just whereit's supposed to be.

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

A nurse, Wendy Lord, comes in to check Naia's pupils and adjustthe 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 whenan ultrasound test changed their lives, just hours before they planned to leavefor a Vineyard vacation.

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

Greg and Tierney can't help but smile.

Eckel leaves and Tierney's mother takes care of her unfinishedbusiness. Tears streaming down her face, Joan bends low and kisses Naia on theforehead.

"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 longerthan Greg and Tierney expected. She'll be here at least one more day, breathingwith help from a ventilator. She's fighting a fever, and her blood pressureis 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 systemwill kick in -- she barely responds. Today, though, they hope to wean her fromthe respirator entirely.

The day begins with a visit from a nearly six-foot Easter Bunnywho leaves a basket of toys and a blue-and-yellow quilt sewn by Girl Scout Troop988. Naia sleeps through the visit.

At 11:30 a.m., Ellison removes the drainage tube from Naia'schest. Then, at 4:30 p.m., he returns to remove the breathing tube. Naia isdeep 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 shedidn'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 continuesto sleep. The doctors order an antidote for the morphine, called Narcan, andshe finally begins to stir. Then she starts to thrash, pulling at the tubesin 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' roomfor 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 ofa 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 toreturn.

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

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

It's partly the silky ribbon a nurse has tied to a lock of herhair. 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 ona 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 pinkof a photo clerk's baby ideal.

It's her own unique color.
 

---

LIFE WITH NAIA

December 10, 1999

Last of six parts

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

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

Greg wishes he could tell her all the things in his heart. Hewishes 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-olddaughter at home.

He says none of that. It would seem odd, intrusive. When herwork is done and his groceries are neatly packed, Greg says, "Thanks." He givesher 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 comfortablyinto life with Naia.

Still, a day rarely goes by that doesn't include reflectionson the choice they made. Not that there are doubts. Greg's grocery store encountermerely reinforces his and Tierney's certainty that they made the right decision10 months ago about carrying Naia to term.
 

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

"It felt really nice to see she's not closeted in a facilitysomeplace. 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 seeany adults with Down syndrome in the community are at their end."

They know there will be unforeseen problems ahead, obstaclesthat cannot be corrected by doctors, prayer, effort, or time. But with Naiagrowing stronger, more active, and more inquisitive every day, Tierney is equallyundaunted.

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

For all their willingness to tackle the hard work ahead, Tierneyand Greg know it's too early to predict how independent Naia might be. It willbe years before anyone can fully gauge how the extra chromosome in every oneof 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'sdamaged heart, and the results are as visible as the tender rolls of fat thathave sprouted on her once-frail body.

In addition to the high-calorie formula she still drinks, Naiahas begun eating mushy cereal from a spoon. Soon she'll graduate to squash andmashed 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'supset, they're full-throated yells.

With each passing day, Naia seems to come more into her ownas an individual. She has begun playing a flirtatious game of peek-a-boo withvisitors, staring at them until they make eye contact, then quickly turningaway. She has begun rolling over and using her pudgy arms to propel herselfforward while on her stomach. She uses this precrawl to pursue her new favoritediversion: 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-fundedvisits from therapists with Connecticut's Birth-to-Three System, which providesearly intervention for children with disabilities. Similar programs exist inMassachusetts and many other states.

Mary Halloran, a developmental therapist, has been thrilledby 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 feetand played with her hands at her midline. She's experimenting with sounds andis very aware of what's going on around her."

Between visits, Greg and Tierney supplement the work being doneby Halloran, occupational therapist Wilma Ferkol, and physical therapist BonnieHerrin. 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 usor for anyone with children. There's always something else to be working onwith your kid," Greg says. "It's not that we're going to be able to work ourway out of these deficits, but we'll do whatever we can to be further down theroad."

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

When cardiologist Harris Leopold listened to Naia's heart onMay 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 bloodpressure, making life easier for her rebuilt heart. And just as cardiac surgeonLee 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. Sightand hearing problems are common among people with Down syndrome; Naia mightneed glasses by the time she turns two. More ominously, children with Down syndromeare 15 to 20 times more likely than other children to develop leukemia, andmore than 25 percent of adults with Down syndrome develop Alzheimer's-like symptomsof dementia after age 35.

But overall, almost from the moment Tierney and Greg broughtNaia home after surgery, their focus has changed. No longer fearful about Naia'ssurvival, they are introducing her to the world. After being kept safely insidenearly all winter and early spring to avoid potentially deadly colds, Naia hasbecome a girl about town, visiting parks, stores, restaurants, and the homesof family and friends.

Naia's public appearances prompt regular cries of "What a cutebaby!" 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 awonderful 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 notwant to seem impolite. But Greg and Tierney suspect some people either don'trealize she has the disorder or think she has only a "mild" case.

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

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

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

In fact, the facial features common among children with Downsyndrome are somewhat more subtle on Naia. For instance, her eyes don't slantsharply 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 thedisorder whose mouths are small and whose jaws are slack, giving their tonguesthe appearance of being large and protruding.

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

"I know she's cute, and I think she would probably be just ascute if she had those features. But would she?" Tierney says. "Would she beas 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 versusan invisible minority. I have no doubt that people who don't like black peoplewill let me know very quickly, one way or another," he tells Tierney. When thathappens, he reacts accordingly, deciding whether to steer clear or confrontthem.

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

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

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

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

Only now can they fully appreciate the message.

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

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

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

Inside the church, Greg holds a white candle, Tierney holdsNaia, and the Rev. Henry Cody blesses her with sacramental oil and water. "Sheis now called a child of God, for indeed she is," says Cody, who has known Tierneysince 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 sharein the life of their own bodies," it says. "This invitation will be prolongedwith every mouthful of food, every drop of medicine, and every inch of shelterthey provide."

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

Just when life seems to be calming down, Greg, Tierney, andNaia 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, MaryFairchild, has been living in the nearby apartment they purchased shortly beforeNaia was born. Mary and Naia spend most days there while Tierney goes to workand 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 buildingdown the street. Embers from the blaze have taken flight, landing on the buildinghousing Greg and Tierney's future home.

No one is hurt, but the new apartment is destroyed, much ofit 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 takenine 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 nextmonth. 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'mat 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 goodthing.

"We've learned that we really are the people we thought we werewhen we married," Tierney says. "Sometimes it takes a long time to learn howyou'll react together in a crisis. I think it's safe to say now we know exactlywho 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 throughthe decision about Naia.

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

"You learn quickly that as long as you're right with the personyou'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 stillhasn't held her.

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

Tierney and Greg's frustration reaches a boiling point whenErnie's girlfriend casually mentions during a phone conversation that he's bouncingher 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 askshim that question over pizza at a Bertucci's restaurant.

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

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

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

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

Tierney is shocked and saddened, a bit sickened as well. Yetshe keeps her tone level and tries to point out the illogic of his words, thehypocrisy 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 beback home with Naia and Greg than hear any more of this.

When he hears about the dinner, Greg is disgusted and shockedby 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: Naiais a victim of garden variety discrimination. Ernie would reject any child oftheirs, not just one whose genetic disorder once made them consider abortion.Perhaps the "tragedy" Ernie had envisioned last summer had nothing to do withDown syndrome.

In a phone conversation nearly a week later, Tierney spellsout a set of new rules to her father. "I can't have my daughter in an environmentwhere 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 toher, then I have a problem."

Two days later, Ernie calls back with an apology. He was tooblunt, cruel even, and the comments he made at Bertucci's don't reflect howhe really feels, he says. He might not agree with Tierney's choices, but hesays 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 importantis that you respect my child, and that you demonstrate that with your actions."

Ernie says he understands. Tierney and Greg, hurt by his wordsand 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 hasbaked 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 assessmentfrom the Birth-to-Three therapists. "Naia's strength has improved greatly overthe past few months," it says. "She visually explores and takes in much of whatis happening in her surroundings. . . . Naia is a very friendly little girlwho 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 therapistsestimate 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 "expressivelanguage."

More upbeat is Naia's one-year medical report. After routinelydepressing 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, pullinghis hair. Then Corcoran, her pediatrician, bursts into the room with outstretchedarms and a hearty "Happy Birthday!"

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

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

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

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

This baby who flirted with death, who arrived for surgery eightmonths ago near the bottom of the Down syndrome growth chart, has made a stunningreversal. She is now in the 50th percentile for weight and the 75th percentilefor height among children her age with Down syndrome. Naia has even grown herway 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 Gregremember the painful knowledge gained from prenatal testing. But now that painhas been replaced by pleasure. When they think about the summer of 1998, there'sa 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. "Beingprepared 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 herselfin the midst of her presents, pulling at the shiny wrapping paper and takingan occasional lunge at Onyx the poodle. Using the couch for balance, she pullsherself 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 tradedhope for something more concrete, an amber locket that opens to reveal tinyphotos of Greg and Naia.

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

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