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Second of six parts
Greg and Tierney sit like defendants awaiting a verdict, their backs stiff, jaws clenched. Holding hands in their obstetrician's office, they brace for the results of the final test that will reveal whether their unborn child has Down syndrome.
Dr. Michael Bourque leans across his desk, tries to meet their eyes with his, and softly begins: ''I'm really sorry....''
They were prepared for bad news, but still, tears wash Tierney's face. Greg feels the air rush from his lungs.
The amniocentesis test confirms the preliminary findings: If they continue this pregnancy, their child will be mentally retarded and marked by the distinctive features and ailments of Down syndrome. On top of that, the child will have a life-threatening heart defect.
Greg catches his breath and asks Bourque: ''What do people usually do? I mean, in terms of keeping the baby.''
Bourque leans back in his chair and considers the question.
It is Tuesday, Aug. 4, 1998, 11 days since Greg Fairchild and Tierney Temple-Fairchild got the first hint of trouble during a routine ultrasound.
They returned home last night from Martha's Vineyard, having spent the last hours of an abbreviated vacation with Tierney's sister Tara and brother George, who came to the island to offer support and advice. George sat with them on Philbin Beach and subtly pressed his case for abortion; Tierney and Greg said they were still gathering information, weighing options.
Once back home in Hartford, Tierney and Greg knew they weren't ready to resume their normal routines. Tierney called her boss at United Technologies, where she manages education programs, to say she needed more time off. She explained only that ''complications'' have arisen in her pregnancy. Greg made the same call to Columbia University, where he is a doctoral student and instructor at the business school.
Now, as they sit with Bourque at St. Francis Hospital, their every fear realized, they seek guidance that isn't forthcoming.
''People do all sorts of things in this situation,'' Bourque says. Through a haze of emotion, they hear him ramble through a noncommittal answer. He says some people don't abort under any circumstances, and others abort if the child isn't a boy. He also says an abortion would have to be done elsewhere; St. Francis is a Catholic hospital.
''It's really your decision. It's up to you,'' he concludes.
Afterward, Greg is irritated, feeling he gained little useful information about Down syndrome, the heart problems, or how to respond. He wonders why Bourque doesn't seem to know more.
Tierney, who has known Bourque since she was 19, suspects the doctor knows more than he's saying. She thinks: Is he worried about being sued? Does working in a Catholic hospital limit what he can say about abortion? Is he going overboard trying not to influence us?
They drive several miles to Connecticut Children's Medical Center to see a pediatric cardiologist, Dr. Harris Leopold. There, for the first time, they get an upbeat assessment from a medical professional: Leopold's nurse, Karen Mazzarella.
''Everything will be fine,'' she tells them. ''Your biggest worry is going to be whether your child wants to ride a motorcycle or get a tattoo.'' In the hallway outside her office are bulletin boards covered with photos of children who have undergone successful heart surgery. They are babies, little kids, and teenagers, in a rainbow of colors. Some have Down syndrome.
Leopold is as encouraging as Mazzarella, even in his body language. Rather than separating himself with a desk, he cozies up close, pulling his chair forward so their knees almost touch. With detailed charts he illustrates the heart defect, explains its effects, and shows how it would be repaired.
He saves the best for last: ''The success rate for this surgery is better than 90 percent.'' And, for reasons involving the shape and development of the heart valves, the prognosis is best among children with Down syndrome.
Greg feels vindicated. His reading about the heart defect had led him to believe the odds were promising. He refused to be shaken from that belief, despite the bleak scenario Tierney's brother presented of a brief and painful life for their child. But Tierney is oddly unsettled.
On the beach at Martha's Vineyard, she had told her brother she would only abort if she learned that the heart defect meant certain death. But now, despite hearing an encouraging assessment from Leopold, she is gripped by doubt.
She wonders if Leopold is downplaying the effects of a damaged heart on a child with Down syndrome. She probes for a darker response: ''Will there be some kind of interaction between the two, so having the heart defect will stunt development and make it even harder for this child?'' She asks it several times, in several ways. Each time, Leopold says no.
On the way home, Greg is fuming.
''Do you really want this child?'' he demands. ''What's wrong here? You've got doctors telling you that everything is going to be OK. Why don't you believe them?''
''I don't know,'' she says, the hope that had sustained her ebbing away. ''Maybe it's their job. Maybe they only tell you the good parts because this is what they do. I'm not sure they're giving us the right information, or maybe he doesn't really know about Down syndrome. I just don't know.''
She wants to see another doctor, a genetics expert who is an authority on Down syndrome. That appointment is in two days.
Tonight, though, there is unfinished family business.
Greg and Tierney still haven't called her father, Ernie Temple, an engineer as solid - and at times, as unmoving - as the granite of his home state of New Hampshire. Tierney was in the eighth grade when her parents split up.
''We've had some bad news about the baby,'' Tierney begins. When she finishes, Ernie says, ''Well Tierney, that's really too bad. But you know, the way medical services have improved, with technology, there's a lot that can be done.''
The phone call ends, and only then does Tierney catch his meaning. He didn't mean medical services and technology to help a disabled child. He meant abortion. She calls him back.
Ernie elaborates: ''Do you understand what having a child with these disabilities is going to bring to your life, to both of you? You've got career goals, you're both professionals.''
Then he shifts focus. ''Do you understand the baby is going to be in pain? Do you want to put the baby through that?
''This child will cause trauma and tragedy from the first breath,'' he says.
Tierney is stunned but she tries again, telling Ernie about state-funded programs that promote physical and mental development among disabled children. She mentions it to suggest that there are resources available for their child. But Ernie sees it through the eyes of a staunch fiscal conservative.
''Do you really think it's fair to keep the baby?'' he asks.
''What do you mean, `fair'?'' Tierney responds.
''Knowing what you do about this child, is it fair for you to take state money, resources?'' Ernie says.
Tierney lets the comment pass, but it is the harshest thing he has ever said to her.
There is little else to say. Tierney promises to consider his points, but tells him she hopes he will be involved with their baby if they decide not to abort. Ernie says he will, but he's hardly convincing.
Tierney is deeply disappointed, realizing only later that she had been seeking approval, not advice. Greg is angry.
He thinks it's possible Ernie is repelled by the idea of a grandchild with Down syndrome. But maybe it's something else: lingering race issues. Greg's thoughts rush back nearly a decade, to Ernie's reaction when he heard the two were dating.
Greg and Tierney met while working as managers at Saks Fifth Avenue in Manhattan, Greg in the dress department and Tierney in women's coats and suits. They were recent college graduates, Tierney from the University of Pennsylvania and Greg from Virginia Commonwealth University. Lunchtime chats evolved into heated debates on politics, society, and race. Romance bloomed.
When Ernie first met Greg and thought he was only Tierney's coworker, the two got along famously. But after Ernie learned the truth, he refused to speak to Greg for a year. Only with time and the inevitability of their relationship did he relent.
Still, neither Greg nor Tierney considers Ernie racist; Greg says he is on good terms with his father-in-law, and Ernie has grown close to Greg's parents, often visiting them in Virginia.
''I've come to believe his concern is about protecting his daughter, helping you avoid a life of discrimination,'' Greg tells Tierney. ''As your father, he would prefer you not have to deal with it. When we met, his attitude was like, you could just stop dating me. And now, he's saying technology can help us avoid the problem, the discrimination, that comes with Down syndrome.''
Ernie's opinion clouds an already difficult situation. And time is fast running out - Tierney's pregnancy is approaching the 24th week, the point at which a fetus is considered ''viable'' and abortion is illegal except to protect the mother's life or health.
A decision looms, and still Tierney and Greg are shifting positions repeatedly.
Two days after the talk with Ernie, Greg and Tierney return to Children's Medical Center to see Dr. Robert Greenstein, a geneticist and authority on Down syndrome. Greenstein is as encouraging as Leopold was, explaining the strides being made in helping children with Down syndrome lead full and happy lives.
More good news, but Tierney is still struggling.
''What more do you need to know?'' Greg asks.
Tierney is still worried about the heart, and also about the chance their child will be in the minority of Down syndrome cases with profound mental retardation. ''Maybe we should do the termination,'' she says, avoiding the word abortion. ''But I'm really conflicted. Even though I'm feeling good about all the information we've received, maybe we're trying to do too much.''
Soon, Greg is beset by new doubts of his own.
''Is having a child with Down syndrome going to present all sorts of complications with other children?'' he wonders aloud. ''What about the younger children being required to take care of their older sibling, possibly for the rest of their lives from a financial perspective? Would keeping this child mean we aren't able to adopt a child later?''
The case for abortion seems to be growing stronger.
Greg calls his parents to voice his fears. At first Bob and Mary Fairchild listen quietly, as they have throughout these past two weeks. But Mary can hold back no longer. She blurts out: ''So, you're just going to go with the abortionist? ''
Bob, quiet by nature, decides it's time to speak up. ''Gregory,'' he says to his beloved only son, ''this is not a tragedy. This is not the end of the world. All of us are born with defects. If you and Tierney give this child the love you have for each other, this child will be all right.''
The call helps, but Greg and Tierney want more answers.
Tierney asks their genetic counselor, Alicia Craffey, for phone numbers of people whose children have Down syndrome. The calls yield uniformly heartwarming stories of prom dates, family vacations, and sleepaway camps, of joyful children overcoming obstacles and enriching the lives of their parents and younger siblings.
There is some talk of financial strain, but - unlike many prospective parents in their situation - that issue plays little role in Tierney and Greg's decision. Both have already made career and educational choices that put personal goals ahead of monetary concerns. Instead of starting a college fund, they decide, they would open an ''independent living fund'' for their child.
Still there are nagging doubts. Using another number supplied by Craffey, Greg calls A Kids Exchange, an organization that helps arrange adoptions for children with Down syndrome. If the problems overwhelm them, they wonder, could an adoptive home be found for their baby?
''No problem,'' says Janet Marchese, who runs the matchmaking service from her home in White Plains, N.Y. ''I have a long waiting list for these babies.''
Greg asks, ''What if it takes three years or more to determine how severely mentally retarded the baby is?''
She repeats: ''No problem.''
''OK then,'' Greg says, ''How about finding a home for an interracial child, with Down syndrome and a heart defect?''
''No problem.''
Now there are no more questions to ask, only a decision to make. After all the twists and turns, all the changes of mind and heart, that is the final piece of information they need.
Tierney and Greg talk about the encouraging medical outlook, the upbeat stories of children with Down syndrome, and the possibility of adoption. They talk about the mechanics of abortion. They talk about their sense of themselves and each other. They talk about their families. They talk about love.
They remain anxious about the heart, about severe mental retardation, and about the long-term effects on their lives.
But when there are no more words left to say, it doesn't add up to abortion. They look at each other and know they have decided: They will have this baby.
They call it a leap of faith.
''If I had to terminate, I could bring myself to do it,'' Tierney tells Greg through tears. ''But to terminate in a circumstance where I was afraid of taking on a challenge, I just don't think I could live with the repercussions it would have on my life. On our life together.
''Why wouldn't I allow God to take this pregnancy where it needs to go? And if my baby is going to die in heart surgery, my baby is going to die in heart surgery. My dad might say, `Tierney, why do you have to go through that, or why does your baby have to go through that pain?' But I have to trust.''
Five days later, Aug. 14, the legal deadline for abortion comes and goes. Greg doesn't give it any thought. Tierney has a twinge of doubt, but it passes.
Now that a decision has been made, they have to share it with their families. The hardest calls are to Tierney's father and brother because they were the biggest proponents of abortion.
Unwilling to confront Ernie, Tierney is brief and to the point. ''I'll be there to support you,'' Ernie says.
Several weeks later, during a visit to Ernie's house in New Hampshire, Greg goes a step further. ''I know you said you're going to be supportive, but you also said some things that indicate maybe you're not going to be,'' Greg tells him.
Ernie repeats his pledge of support, but doesn't waver from his original stand. ''I'm supported in what I believe,'' he says of his contention that continuing the pregnancy would be a tragedy.
''Whether you agree or not with our decision,'' Greg says, ''it's important that you be involved with your daughter. She needs you and wants that.'' Ernie says he understands.
Tierney is tougher on her brother. She tells George the information he shared with them was frightening, often wrong, and reflected his personal biases. George grows defensive, saying he was only trying to help. But in his own way, he eventually acknowledges her point. A few days later, a bouquet arrives, with a card from George and his wife Allison: ''We love you and look forward to meeting our new niece or nephew.''
As it turns out, an unintended byproduct of all the prenatal tests is an answer to that question: It will be a niece. To their delight, Tierney and Greg are expecting a girl.
With the decision made, Greg returns to school. Tierney goes back to work after role-playing with Greg about what to say when people ask about her absence. ''I say, `I'm doing fine.' That's true. My baby's not fine, but I'm fine. I'm not lying, and I really don't need to go into it any more,'' Tierney says.
Over the next few weeks, Tierney and Greg slowly explain the situation to select group of colleagues and friends. Some take it in stride, some cry, some pray, some offer sympathy. Tierney and Greg tell them there's nothing to be sorry about.
''Please don't be upset for us,'' Greg tells friends who take it hardest. ''We're going to do what we have to do. It's serious, but it's not the end of the world.''
Two acquaintances express surprise that it was genetically possible for an interracial couple to have a child with Down syndrome. On the flip side, Greg suspects some others think the mixing of races played a role, based on the flawed assumption that his and Tierney's genes were incompatible.
In fact, no link to race has been found in the 133 years since the syndrome was identified by an English doctor, John Langdon Down. The only known genetic link involves a tiny number of people who are hidden carriers; tests show neither Greg nor Tierney is one. To the best of anyone's knowledge their unborn child's condition was a fluke, a missed signal at conception.
In mid-November, with just weeks until the due date, the nesting instinct takes hold. Greg and Tierney buy an apartment in the complex where they have been renting. It has only one bedroom, just like their unit, but the price is too good to pass up. ''It has a wonderful view of Taco Bell,'' Tierney jokes. ''We'll have a new place, a new baby, new everything.''
Bourque, Tierney's obstetrician, monitors the pregnancy closely. In November, her ninth month, there are signs that growth of the fetus has slowed. Bourque decides to schedule the birth for Dec. 3. Tierney will be induced to deliver, so specialists can be on hand to deal with any emergencies.
The slowed growth renews Greg's fears, which are compounded by the knowledge that the risk of stillbirth is higher among fetuses with Down syndrome. It is much too late to change course, so he decides not to share his thoughts with Tierney.
''If they had found some other kind of defect, like a limb missing, you know what you're getting into,'' Greg thinks. ''They could tell you where the limb ended and where it began. They can't tell us how mentally retarded she'll be, how severe the effects of Down syndrome will be, and that's hard.''
It is Sunday, Nov. 22, and Tara has come to Hartford to spend the day and see the new apartment. After her initial doubts, Tara now sees her unborn niece as a blessing and a gift.
Greg plans to make a chicken dinner, but first they have a leisurely lunch at the Prospect Cafe in West Hartford. Greg and Tara talk animatedly about work, but Tierney sits quietly.
They come home and pop a movie into the VCR. As night approaches, Tierney grows increasingly certain something isn't right. She grabs her copy of the pregnant woman's bible: ''What to Expect When You're Expecting.'' She rustles through the well-thumbed pages, searching for information on fetal movement.
''I can't remember the last time the baby kicked,'' she tells them both. Turning to Greg, she says quietly: ''I'm worried.''
TOMORROW: A difficult birth
This story ran on page 01A of the Boston Globe on 12/06/99.
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© Copyright 2002 Globe Newspaper Co. |
AT A SURPRISE BABY SHOWER FOR TIERNEY