ierney curls herself into a fetal position on a hospital gurney. She is shaking, praying, drawing air in shallow breaths as a doctor inserts a needle into her spine. Her eyes are wild.
As the needle slides between two bones of her lower back, a strange, piercing sensation shoots down her leg, as though she has stepped on a live wire. She feels alone and afraid; her husband Greg has been told to wait outside the operating room.
Tierney's mind races. She thinks of the day four months ago when a routine ultrasound foretold her baby's future, her husband's, and her own. The memory makes her shiver more, and the doctors who surround her take notice.
''There's nothing to be nervous about,'' says her obstetrician, Dr. Michael Bourque.
She nods, but says to herself: ''Oh yeah. I'm having this emergency delivery, my baby has all these problems, but there's nothing to worry about.''
It is Nov. 22, 1998, 11 days before Tierney was originally scheduled to deliver a baby girl with Down syndrome, a major heart defect, and uncertain prospects.
The day began leisurely enough, with a visit from her sister Tara and plans for a roast chicken dinner. But as the hours passed, Tierney grew increasingly aware that her unborn child -- on most days an active kicker -- was unnervingly still.
Tierney had seen Bourque just four days earlier, and everything seemed fine. He even warned her to expect less kicking as the due date approached, because the baby would be taking longer naps. But this nap was lasting too long.
When Tierney shared her worries with Greg, he went to a drug store and bought a stethoscope to listen for a heartbeat. All they could hear was a gurgling sound, so Tierney called Bourque's office. He told her to drink fruit juice and eat a candy bar, to see if they could stimulate the baby with sugar.
An hour later, as day turned to night, still nothing.
Another call to Bourque prompted action: He instructed her to go immediately to St. Francis Hospital so he could check the baby's vital signs. Tierney and Greg rushed out without packing a bag, leaving gifts and baby clothes strewn across their bed, scared but fairly certain they'd be home soon.
At first, the fetal monitor strapped by a nurse around Tierney's middle picked up a steady heartbeat. Their anxieties started to ease. But the heart monitor was set for 45 minutes to track the beats over time. Soon the beats grew further and further apart. ''I better get Dr. Bourque,'' said the nurse at Tierney's side.
Along with Bourque came an ultrasound machine, which showed that Tierney and Greg's unborn daughter wasn't moving. The amniotic fluid that normally bathes a fetus in the womb had dried up; Tierney's body apparently had stopped producing it. Bourque asked a medical resident to assess the situation.
''Since she has no fluid, I'd give her a zero for that. And I'd give her a one for movement,'' the resident said. On a scale of 10, Tierney and Greg's unborn child was failing badly. The chance of a stillbirth -- already higher than usual as a result of the Down syndrome -- was increasing with each passing minute.
''Your daughter wants to be delivered tonight,'' Bourque said.
With Greg running alongside, a birthing team rushed Tierney to an operating room and began preparing for an emergency caesarean section, in which an incision is made through the abdomen and uterus to quickly remove a baby.
Now, not two hours since arriving at St. Francis, Tierney is curled on the gurney and the anesthesiologist is injecting her spine with drugs that will numb her lower body.
As he waits outside, Greg dons blue-green hospital scrubs and calls Tierney's mother and sister. After a few minutes, the anesthesiologist pinches Tierney's leg to test if the drugs are working. When Tierney can no longer feel the doctor's touch, Greg is admitted to the operating room.
He sits at Tierney's side and watches Bourque work.
Bourque calls to them, just moments after making the incision: ''We can see the baby's head.'' He moves with a single, practiced motion, like a father lifting a child who has fallen. Bourque pulls from Tierney's uterus a baby covered with the muck of new life.
It is 10:16 p.m. and Tierney Temple-Fairchild and Greg Fairchild have just become the proud and nervous parents of a 5-pound-12-ounce, 17-inch, brown-haired, not-quite-healthy baby girl.
* * *
Quickly the umbilical cord is cut, ending not only the baby's physical attachment to Tierney, but also cutting off the rich supply of blood that her own damaged heart cannot provide. If she survives, she will need major surgery before she turns one.
Tierney's face is screened by a drape, and she hears only the faintest noise from her newborn daughter. She knows the baby is alive, but she is frightened by the absence of a hardy cry. Tierney prepares herself for the worst.
''Did I do something wrong?'' she asks Greg.
''No, nothing,'' he tells her. Setting aside his own worries, Greg smiles and says she did great. He doesn't mention that their baby's skin seems to have a blue cast and her movements are sluggish. On the positive side, Greg notices she has relatively good muscle tone, in contrast to the ''floppy'' body they were told to expect from a newborn with Down syndrome.
A team of neonatal specialists swings into action, taking the baby into an adjacent room with Greg following close behind. They suction fluid from her nose and mouth. They clean, dry, weigh, and measure her, speaking to her in dulcet tones.
They give the baby a dangerously low score of 2, out of a possible 10, on a newborn health scale that measures heart rate, breathing, muscle tone, color, and reflexes. After five minutes, the score rises to 5; at 10 minutes, it is 7, a hopeful sign but no guarantee of survival.
Tierney is still on the operating table, dazed and anxious. She begins to shake again as Bourque closes the incision. As he sews, he comforts her, praising her for recognizing the danger: ''Nice call. You saved your daughter's life.''
Still, Tierney is doubtful, wanting to see for herself.
Greg returns minutes later, wheeling the baby toward Tierney in a plexiglass bassinet. He lifts their swaddled daughter and puts her close to Tierney's ashen face. She brightens, marveling at the delicate life they have created.
''Oh! She's beautiful,'' Tierney says.
But then, the combination of anesthesia and stress catches up to Tierney; she starts throwing up. For the first time, Greg is forced to juggle his roles as husband and father. He trades the baby for a bedpan, and holds it for Tierney.
When everyone is cleaned up, they head off in separate directions. Tierney is taken to the recovery room. The baby is brought to the neonatal intensive care unit. Greg goes searching for Tara and Tierney's mother, Joan Temple.
When he finds them outside the maternity ward, Greg says, ''You have a granddaughter. You have a niece.'' Joan kisses him. Tara grips him in a long, strong hug.
''My baby had a baby,'' Joan says over and over.
Greg leads them to the intensive care unit. It is dark and quiet, yet a buzz of smooth efficiency saturates the filtered air. Nurses glide silently among seven bassinets, four of them containing babies who barely crease the crisp white sheets.
Around each bassinet is a maze of high-tech machinery and intravenous feeding tubes, oxygen tanks, and monitors that glow and hum and keep watch like worried parents. Not all these babies will be going home.
A nurse leads them to their daughter, granddaughter, and niece, who is napping in bassinet No. 5 from the exhaustion of birth. They marvel in unison at the baby in the tiny knit cap with tufts of hair peaking out. They admire her long fingernails and rosebud lips.
''Hello sweet baby,'' Joan says. ''Hello.''
Left unspoken are the doubts about her survival. Her serene countenance notwithstanding, the baby's bloodstream has a dangerously high level of acid -- an indicator of insufficient oxygen in her system. She has a frighteningly low number of platelets, which are necessary to stop bleeding. She will get at least one transfusion in the next two days. She requires supplemental oxygen from a tube in her nose. Later, it will come from a transparent tent over her entire face.
Her blood pressure is low, her kidney function is questionable, her lungs don't seem to be working quite right. She still hasn't had a good cry. She shows signs of an infection, though the doctors aren't certain about that.
Then, of course, there's the hole in her heart. It's not clear how many of the ailments are linked to that, but most appear to be the result of her difficult last hours in the womb.
Later, Bourque explains that Tierney's placenta -- the organ that links the baby to the mother -- had begun shutting down early, depriving the baby of nourishment. It is a relatively common occurrence among babies with chromosomal defects like Down syndrome, and he suspects the baby would have died within a day if not for the emergency delivery.
At 1 a.m., his daughter now three hours old, Greg stands over her, trying to digest a torrent of information about the monitors that surround her. He furrows his brow and studies the heart rate, the blood pressure, the oxygen saturation level. It is as though he is trying to move the numbers to their proper levels through sheer will and new love.
''Can I touch her?'' he asks a nurse. She explains he will need to thoroughly scrub his hands and arms. He wants to, but knowing that Tierney is alone and waiting, he declines.
When they are reunited in the otherwise empty recovery room, Greg shares with Tierney what he knows of their baby's condition. Tierney feels pleased she realized there was a problem. But she wonders if her active lifestyle was partly to blame, and she wishes she had called Bourque sooner.
''Did I reach too high? Did I do something? Did I not rest enough?'' she says. ''What would have happened if I didn't call at all? Would the baby have died?''
Both Tierney and Greg wonder: Will she die anyway?
* * *
It is after 2 a.m. when they drift off to sleep in Tierney's hospital room, she in the bed and Greg scrunched on a fold-out chair. But first, they formally give their baby a name they had settled on.
Like most expectant parents, Tierney and Greg had spent the last months of pregnancy puzzling over names, adding and deleting prospects on a list posted on their refrigerator. Both were drawn to unusual names, and something clicked when Greg spotted Lake Nyasa -- a huge body of water in Malawi -- while scrolling through a computerized encyclopedia.
Fiddling with the lettering and dropping the ''s,'' they came up with Naia, which they pronounce ''Nye-uh.'' Only later will they learn it is more appropriate than they ever imagined. With a slightly different spelling, their baby's name is a Swahili verb that means ''decide.'' As a noun, it means ''purpose.''
For a middle name, they chose Grace. For Tierney, it evoked the hymn ''Amazing Grace'' and had the added benefit of honoring a relative of her father's who died young. For Greg, it reflected a desire to heal the wounds that surrounded their decision.
''For me, grace is the concept of forgiveness,'' he told Tierney. ''This has not been easy on our family. I believe, or I wish, that the baby will do more to raise people, to change people's expectations and beliefs. She provides an opportunity for people to have grace, to mend bonds that were strained.''
* * *
When day breaks, Tierney sleeps late while Greg goes home to walk their dog. When he returns, they are eager to see Naia Grace and learn more about her condition.
When they enter the intensive care unit they meet one of several new doctors in their lives, cardiologist Seth Lapuk.
In a small conference room away from the bassinets, Lapuk elaborates on what Greg and Tierney already know about the heart defect, the low blood pressure, the lack of pressure in the lungs, the whole array of problems facing Naia.
Then Lapuk tells them a more personal story.
One day when he was a boy, he was playing in his family's garage, trying to reach a wall-mounted button that would open the electric garage door. He arranged a teetering stack of boxes under the button and began climbing. He was halfway to the top, when his younger brother came in. Without a word, the younger boy went over to a car parked in the garage, reached in and hit the remote. The door rose while Lapuk watched in astonishment.
Lapuk's younger brother has Down syndrome.
''Don't underestimate what your daughter might do. Expectations with these children are often lower than they should be,'' Lapuk says. ''You don't know what can happen.''
Lapuk's story heartens them as Greg pushes Tierney's wheelchair toward Naia's bassinet.
Tierney leans her head against Greg's side. ''That's our baby,'' she says. It is the first time Tierney has seen their daughter outside the delivery room.
Greg touches Naia, his hand as big as her entire torso. ''It's OK little girl. It's OK,'' he says.
''She looks good,'' Tierney says in a quiet, hopeful voice, her eyes half-closed from painkillers and lack of sleep.
Later, back in Tierney's room, there are three books on a table by her bed: ''What to Expect the First Year,'' a memoir on race called ''Life on the Color Line,'' and ''The Holy Bible.'' Martha Stewart is on the television, on mute.
A bouquet from Joan brightens the room. A camera sits on a rolling table, waiting for a happy moment to record.
For now, the joy at the arrival is tempered by fears about Naia's health, prompting reflections on their decision.
''You know, the baby might not make it,'' Greg tells Tierney, his voice choked with emotion. If Naia dies, he says, some people will think: ''You see, you should never have had this baby. It was tragic for the baby, it was tragic for you, and you should have terminated months ago and saved everybody this huge problem.
''And as traumatic as that will be for us, I think, yeah, it will make those people feel better because it will confirm what they were thinking all along,'' he says.
Tierney nods in understanding, but no matter what anyone else might say, she is convinced they made the correct choice.
''The baby is doing well enough that she deserves a fighting chance, and she deserves her own opportunity,'' Tierney says, slumping in her hospital bed. She wears a pink bathrobe over a white nightgown. Around her neck is her ''hope'' necklace, which she hasn't removed since arriving at the hospital.
''It's not like she's on a respirator. She's breathing on her own. Yes, she's got some challenges and she might not make it, but this was the right thing to do. I'm convinced of that.''
Tierney's beliefs were reinforced by the sight of one of the other babies in the intensive care unit, a baby that looks like Naia in miniature. The baby's grandmother was holding her in a rocking chair, whispering encouragement to the frail infant. The woman's focus was complete; she never looked up.
The baby's mother was in a car accident that triggered premature labor. The baby was born at 26 weeks -- 14 weeks premature -- and weighed just 1 1/2 pounds. Tierney realizes that's roughly the same size Naia was when they were deciding whether to continue or abort.
''They are spending a ton of energy saving this baby,'' she tells Greg, ''and this baby is worth saving.'' For a moment, it isn't clear if Tierney is talking about the other woman's child or her own. Then, gulping air between words she'd rather not speak, Tierney adds, ''We had to give her the chance to make it. And if she ...can't...she...can't.''
* * *
As the days pass, Naia clings ever more fiercely to life. Responding to intense, around-the-clock care from the St. Francis staff, she begins to show slow but steady improvement.
Her kidneys begin to work and the oxygen level in her blood rises. The acid in her blood is tapering off. She has begun to shed some of the IV's, monitoring devices, and other medical appendages that had sprouted from her tiny body like tentacles.
Yet problems remain, including a persistently low platelet count in her blood.
On her fourth full day of life, it is Thanksgiving, and Joan delivers dinner to the hospital. Before eating they say grace, which has special meaning now that the word is Naia's middle name. Their prayer includes an offer to help those in need.
It occurs to Tierney their wish has been granted. ''I'm really supposed to be helping somebody less fortunate, and it's going to be my baby,'' says Tierney, as she prepares to go home without Naia.
When Naia is six days old, her condition has improved enough to supplement intravenous feedings with breast milk. Until now, Tierney has been using a pump to collect her milk, storing it for later use. On her first try at the breast, Naia doesn't take much, and tires quickly, but it pleases Tierney just the same.
The next day, Sunday, Nov. 29, Naia gets her first visit from Tierney's father, Ernie Temple, who had argued against her birth but now is trying to live up to his promise of support.
Beforehand, Ernie and Tara went shopping so he could buy a changing table for Naia. They also tried out rocking chairs, and Ernie seemed ready for a grandfatherly role.
On their way to the intensive care unit, Greg tells Ernie about his granddaughter's medical problems and prepares him for what he will see. When Greg picks up Naia, Ernie says she looks good. Then Greg asks Ernie if he wants to hold her.
''No. Not this time,'' Ernie says. The visit ends.
Afterward, Greg and Tierney think Ernie's reluctance was innocent, reflecting his fear of detaching one of her tubes or otherwise harming such a fragile baby.
''Or, you can go with Option Two,'' Greg says, ''and he's uncomfortable with this baby, period. We don't really know.''
* * *
GREG , TIERNEY LOOK
at the new member of their family ,Naia Grace on her first day home.
(Globe Photo / S. Kreiter) |
Five days later -- Dec. 4 -- Naia has beaten the worst of her most immediate problems and is ready to go home. She has been in the hospital 12 days, eight more than planned.
It's a surprisingly warm December day, with temperatures topping 60 degrees and the roses outside St. Francis still showing off their rich red petals.
Greg's parents, Bob and Mary Fairchild, have taken a train up from Virginia to meet Naia and escort her home. Both were firmly in favor of continuing the pregnancy. Now that the baby is here, Mary gives voice to their hopes for the future. It sounds like a promise and a prayer.
''I think a lot about how the world will treat Naia,'' she says. ''But the people who love her will be so heavily weighted on her side that how the world perceives her will be totally irrelevant.
''I know it will be challenging for Greg and Tierney,'' Mary says as Bob nods in agreement. ''I wish more than anything they could have had the healthy child they were hoping for. They didn't, and that hurts a lot. But I admire them, and I know they will always want the best and do the best for Naia. That will never change.''
After a final briefing from doctors, Greg and Tierney emerge with Naia. They are beaming. Just a few days ago they didn't know if she would ever leave the hospital.
Naia is bundled enough for a blizzard, tucked under a crochet blanket that was a gift from the hospital. At her side is a black-and-white stuffed dog. She yawns and looks around, at the lights on the ceiling, at her parents.
A nurse pushes Naia's bassinet, but Greg keeps one hand gripped on the side, as if to keep it from rolling away.
On the short drive home, Naia falls asleep. Greg carries her into the apartment, still buckled in her new car seat. He gingerly sets her down on the floor and looks to Tierney.
''OK. Now what?'' he asks.
''I don't know,'' Tierney answers.
TOMORROW: Struggling to grow
